range of motion

This is not a good test for me.  It’s ok if it’s “how much can you move before it hurts?” although even that can be problematic since often, the hurting starts later, and by then it’s too late.  By the time it hurts, the provocation is long over and all I’m left with is the pain.

It came up at the doc’s office last week, although it’s a good analogy for the entire scenario of work right now. Last week, I got hurt at work.  The nitty gritty details make for a long story.   The upshot is that if I’d had accommodations in place, it would likely not have happened.  It involved doing something stupid, but something that everyone was expected to do.  An inconvenience for others, for me it was dangerous.  I had already suffered social judgement for my initial reaction to this set up from a coworker.  After that, on top of not having the formal support of my employer for things like this, I felt stuck, trapped, and like I had to try to put on a good face and just put up with this situation, like everyone else.

I really want to be like everyone else, at least when it comes to things like this.  This involved bounding over bags left in an unnecessarily narrow walkway in a poorly laid out room, executing various “silly walks” to get around the poorly laid out room, or scrunching up myself and my chair so that people could silly walk their behind me, while leaping over said bags.  But I am not, like everyone else.

It’s clear that part of this equation of injury is me.  Not the part where the set up was chosen for the room I worked in that day. But the part where I moved myself in and around this space.  I was constrained by the set up, but I was in charge of my own body – one could argue.  Unfortunately for that argument and for me, I have piss-poor proprioception.  I suspect that many hyperflexible/hypermobile people do.  You combine a physical environment that necessitates contortion with joints that move too far (or move in planes and at angles where they shouldn’t) and you have a recipe for injury.  So why didn’t I refuse?  Why not say “eff this, I’m sitting somewhere else or I’m leaving”?  Well, like I said, I had already gotten some shit for just being me (“you can’t sit there” a young man told me when I put my bag down on a chair while I took my coat off…hadn’t planned to sit in it, just had to put my bag down since I can’t hold the bag while extending the arms unless I’m looking for an ER visit.  This was only the start of a really unpleasant interaction.)  I’m under extra scrutiny at work on account of sick time, and that scrutiny has been extended by someone to things like whether or not I attend work social events so you can imagine how it would go over if it was reported that I walked out of an actual working (not socializing) event.  And lastly, while I have a general sense of  what I can’t do, for some things, I don’t know until I do them just how bad an idea they are.  I’ve been working on living by the motto of “just because you can doesn’t mean you SHOULD” when it comes to movements…like sitting on the couch with legs crossed up under me and reaching all the way down to the floor to retrieve something that fell and rolled under the coffee table.  Can do?  Yep.  Should do?  No.  Why not?

Here’s a little story, from way back before my autonomic nervous system decided to just check out (i.e. back when I was still relatively ok).

In college, in my psych of women class, we had a final exam in one of those big hall lectures.  The TA walked up and down the rows passing out the test.  My test got hit by a gust or something, and floated up off my little chair desk, settling down under the chair in the bleacher style seating in front of and below me.  Rather than get out of my chair and kneel down on the floor to retrieve it, or even get out and walk around to the next row down from me, what do I do?  If you guessed bent forward and reached way down with my go-go-gadget arm to get it, you are correct.  I did it though.  Range of motion.  And something went “PING!” in my shoulder.  I sat back up.  I thought “uh oh.  That hurt.  Hurts.  It’ll pass….nope.  Still hurts.  Hurts more actually.” and then the “no don’t pass out” mantra started.  It didn’t help.  I got up, because that’s a good thing to do when you feel faint and in pain.  And walked, hugging the wall, down to the front of the classroom, where I told the teacher and TA that I didn’t feel good.  I made it to the hall, then hit the floor.  All the way out.  Woke up wondering what my face was pressed on that was so nice and cold (linoleum).

The hurt at work last week was not as bad as the initial and relatively short lived pain from the college exam episode, oh thank god.  I think mostly because this time, when I felt the “PING” I stayed seated.  I stopped moving.  I held my iced coffee on my head and neck, oh cold cloth is not a myth btw.  Always makes me feel better to have something cold on my head and neck when I’m feeling faint.  And it passed, the faint.  The pain, unfortunately, stayed around a LOT longer this time.  I’m chalking that up to nearly 20 years of my body slowing going down the shitter.  I do not bounce back from a bad movement now.  I used to.  Used to run on my ankles, pop my hip in and out with ease, no problem, it was like a party game when I was a little bendy kid.  Now?  Definite problem.  Definite hurt.  And definite disability after.

I saw my doctor the day after hurting myself at work last week.  Sitting on the exam bed, I am asked to turn, first left then right “as far as you can….” “Um, yes, but I’m going to do this slowly and I’m stopping when I think it might hurt later if not now” I tell him.  So I start turning.  And turning.  And turning.  I’m about to stop on the left when he says.  ”Ok, stop, stop stop….Jeeez, you still could work for Cirque du Soleil, couldn’t you?”  Yeah, and this is why range of motion is not a good test for me, I say.

This is extra crappy because since my gut has decided to launch an all out jihad on me, I am very reluctant to take narcotics or anti-spasmotics.  So it’s ice pack, tylenol, NSAIDs, and lido-patches.  Yes, lido-patches are not the best for us, I know.  I do respond to topical anesthetics, just not strongly.  So I put a whole patch on and while I can still feel pain, it’s not as bad.  It’s enough for me to get to sleep if I am very still and stay off the left side.  I am lucky.  The pain itself is not horrible.  It’s there, it’s like a little warning beacon not to bend or stretch or turn too quickly right now, and god help me if I carry something.  I put it at about a 7 at its worst, and it’s like a toothache.  Very concentrated.  I know I am lucky for that.  I am not lucky for having done it, and I’ve spent the days since getting hurt feeling very let down and screwed with by my employer.  To the point where I am making a formal statement to them this week that I am NOT ok with how they’re handling the accommodation request I made, and then starting the official state/fed complaint process.  I hate doing this – it’s a lot of work, a lot of paper, a lot of calling, and I worry for the effects on workplace harmony, but I think I have to because workplace harmony isn’t going to be helped by my hurting myself for their poor planning and negligence (or, if I’m feeling uncharitable, their intolerance and obfuscation).  But let me be clear here.  The stupid thing I did was complying with the demands of my employer.  I did it because without accommodations in place, I worry that I will be judged and evaluated negatively (and possibly penalized, socially or more formally) for failing to comply with demands or expectations.  It’s already happened once, so I’m not imagining that this threat is real.  But I need to learn to not care as much about that as I do about my body.  I wish they wouldn’t make it so hard for me to work WITH them on preserving my health and safety.  My old boss used to say, while perpetrating some truly horrible workplace behaviors on her employees, “You have to be flexible.”  And I’m starting to get that at this new job as well, although admittedly not (yet) to the same blood curdling degree of my former workplace.   And if this week taught me anything about being flexible for people who are refusing to budge for me, its that the range of motion and flexibility of my body is matched only by my will, and I need to firm it up a bit if I’d like to continue working or even living without incurring severe injury.

So that was my weekend.  And week, since that happened on Tuesday.  I spent Wednesday doing some work from home, then at the doc’s and radiology.  Thursday and Friday were rest days.  Yesterday, I cooked.  Have to, or I’ll have no food for the week.  I’m still not done.  Still have to make pudding.  God damn I’m sick of this.  Seeing the nutritionist on Monday.  I do not have high hopes – I want to, but I am trying not to get my hopes up too much since that disappointment is just too much.  Then Wednesday I am seeing a counselor to try to get a referral for mental health.  Boy do I need it right now!  Not in a good place.

I thought I’d post some lovely pictures of my arms and a movement that I can but probably shouldn’t do.  This elbow and hand hyperflexion does not hurt.  And I think it counts only as a little hypermobile because I’ve seen pictures of worse.  Note the pinky in the top picture.  I didn’t even know it did that.

Woman's hyperextended elbow.

Go go gadget arm…

4 Comments
by dyspatient on June 16, 2013  •  Permalink
Posted in talking to healthy people, disability, legal, talking to doctor people, doing something stupid, D.D.D., acutely ill
Tagged ,

Posted by dyspatient on June 16, 2013

http://badturns.wordpress.com/2013/06/16/range-of-motion/

coming out

Happy Pride season everyone!

Big Historic Northeastern City had its Gay Pride celebration last week, culminating in the big bash and parade this weekend.  Watched some nice photos post from friends on FB.

One of the first times I went into the city on my own (well, you know, with other girls just not with parental supervision), we came up from the subway to an amazingly colorful, emotionally vibrant, truly pride-inducing display in the street.  I had no idea what it was, except that there were some outrageously dressed folks who were clearly having one hell of a fun time.  I realized some time later that it was probably the Pride parade.  I wasn’t really very clued in to that aspect of culture at that age.  It was still very much a sub-culture in the early 80s, I myself wasn’t gay, and I and my peers were still too young to really be actively participating in this sort of event.  My own little brother had not come out yet although he did tell me that he realized he was gay very, very young….and I think we did too.  His love of fashion magazine models, pleadings for my sister and me to do his hair and makeup (boy wasn’t our Italian Irish father impressed to see his son, the only boy in the generation, presented in the living room with rouge, hair ribbons, and lipstick), and fascination with my sister’s Farrah Fawcett doll were perhaps the very early clues that he was not moving toward a traditionally straight male gender type.

A good friend who I have not been in touch with in a while contacted me this week to say hi, that he’s sometimes up in my area, and to inquire about maybe getting together for coffee.  I wrote back with a friendly message and I came out to him about my illness.  He wasn’t unaware of it as a progressing thing.  You can’t have known me in the last 10 years and not be at least somewhat aware of it.  However, my degree of disability has increased significantly since I last was in touch with him – to the point where getting together with people requires a ridiculous amount of logistical planning, and even then could end up canceled because I’m just too crappy that day.  I’d been considering writing a letter to my friends and family about this, a formalized sort of statement of “here’s what’s up with me”.  I hadn’t realized until I wrote this out in reply to my friend’s email on Pride weekend that what I’m doing is a sort of coming out.  There are some clear similarities, although some very stark differences too.

While sexual orientation other than girls who like (only)(properly masculine) boys and boys who like (only) (properly feminine) girls is not something I consider pathological, it is something a large number of people do.  And it is a state of being, increasingly seen as how you are and not how you choose to be (cultural universal, occurred in places and times when being gay could earn you a death sentence).  It is concealable.  And it is stigmatized.  I put that in separately from pathological because there are the “love the sinner, hate the sin” types who, I guess, would fall more into pathologizing the state or its expressions but who claim not to hate the person who embodies them.  I’m not sure that is possible, but I’m laying out a logical argument here so for the sake of logic, I’ll accept that the claim for this stance exists and add it to the list of less than supportive social responses to homosexuality/queer sexual orientation.

As with sexual orientation, when people see evidence of your sometimes concealable traits (here, chronic illness), they speculate.  They engage in a process of examining your motives, your being, whether you are bringing “misfortune” (in the case of sexual orientation, the misfortune is other people’s shitty reactions, in the case of chronic illness, it’s that and poor health) on yourself by bad behavior or just plain badness.  I’ve had times in my life where I have felt empowered and energetic enough to take on the job of educating people when I ran into this.  I am sort of tired of that now.  I’d just like to have a little bit of understanding, and lacking that, some respect.

What do I mean when I say respect?  One thing that I mean is that when I “come out”, whether it was by choice (as with my friend via email) or by circumstance (getting sick at work, having to tell someone “I can’t do that like that…I have to do it like this or not do it”), I do not want stupid silly sympathy.  Sympathy, as a slightly removed empathetic response to someone else’s apparent suffering or difficulty, is not a bad thing.  Sympathy that is dumb, that comes with a whole pile of invalidation and invalidization attached, that’s what I’m talking about.  I guess there’s a word for this, and it’s pity.  Pity is not helpful.  Pity allows people to write off the “object” of pity.  God, even the wording is invalidating!  We don’t talk about the object of our sympathy now, do we?  But back to respect.  Outside of pity, which is inherently disrespectful I think, at least how I’m defining it, there is recognition of the validity of the choices that this person is making; respect that they are, in most contexts, the best judge of what they can and can’t do.

This is what is lacking.  I know from my own experience “coming out” about other concealable, stigmatized things and from witnessing others’ experiences, that when someone comes out, the respect response is not only uncommon but rare.  And still….I do contemplate coming out.  Without it, it seems there is an increased chance of misunderstanding, and of lack of emotional or practical respect for your choices and ways of being due to – if nothing worse – social misattribution (see my post “not invisible” for a lot of rambling on that).

So I was just thinking.  If the process of coming out is one that is shared between people with chronic illnesses and people with other concealable, stigmatized traits like some sexual orientations, then does that mean that pride should extend to?  I don’t feel immediately comfortable with that.  Sex is, or at least can be, a good thing.  Love is wonderful.  taking a pride orientation for traits having to do with those domains strikes me as more reasonable than “being proud” of being sick.  I’m not proud of this.  But see, even as I think and write that I realize that the opposite of pride is shame.  And saying “I’m not proud of being sick” is very very close to saying “I am ashamed of being sick” and isn’t that what we struggle with?  Isn’t that basically the nugget at the center of what it means to be stigmatized?  Taking on shame, having shame imposed on you by others.  One means of combating that shame is coming out.  Keeping closeted, and it does require keeping because there’s active maintenance to it, is driven by shame, whether it’s actual internalized shame or fear of encountering others’ shaming behaviors in response to their awareness of (some element of) your “secret”.  And it’s tiresome and tiring.  And when the thing you’re keeping under wraps is a chronic illness, you really don’t have energy and extra resources for dealing with bullshit…so you have to choose. Which entails more bullshit?  Coming out or concealing?

What do you think?  Is it harder to come out or harder to maintain your “cover”?  If we want to move away from shame for being sick, what is the other option?  Dancing queens in the street with rainbow boas are nice but for me at least, this sort of response doesn’t quite seem to fit here.  As much as I may try to find some tiny silver lining here and there (“It makes me more empathetic”, “It helps me to come up with creative ways to do things”), I cannot find any cause whatsoever to celebrate my status as someone with a chronic illness.  I do not want to choose shame though.  What are the other options?  What did you choose, and how did you choose it?

8 Comments
by dyspatient on June 12, 2013  •  Permalink
Posted in accommodations, disability, talking to healthy people
Tagged

Posted by dyspatient on June 12, 2013

http://badturns.wordpress.com/2013/06/12/coming-out/

Blending in

Got a new blender, a Vitamix.  And just in time since on Thursday, the bad GP symptoms came raging back and have plagued me since then.  What prompted that?  I really don’t know.  Here’s a list of things that were different this week:

  • Massive migraine Monday.
  • Meds for massive migraine.
  • Disrupted routine:  Wednesday through Friday I had to attend a local conference.  Those were three days of not being able to eat more than a little thing of lactose free pudding during the day, not getting enough fluids, and having to take meds for the pain I incurred from hauling the departmental laptop around (oh and walking a mile for a lunch that never happened on Wednesday, a mile in the warm, humid sun – thank you coworkers who could not make up your damned minds and then after we’d gotten so far afield from the conference site, decided to just go to a packed Panera)  
  • Rice milk, which I drank on Wednesday after running out of Lactaid.  Haven’t had the rice milk in while since it’s nutritionally crap and I’m trying to make the most out of what I eat right now.
  • Getting really upset (Monday from day derailed by Migraine; Wednesday from…well, all of that.
  • All of the above.
  • None of the above.

Because it could be something else. I’m tracking this stuff, trying to figure it out.

In the meantime, I have an awesome blender, courtesy of my husband, who loves little more than researching and buying gadgets, kitchen included.  I think this thing could pulp mahogany.  This weekend, I finally made carrot soup that doesn’t have carrot chunks and threads in it, veggie chunks and threads = not good for the slow of stomach/ gut.  I made blended sweet potato (oh sweet potato, how I’ve missed you!)  And I made blended (lean) meats, looks gross, tastes yummy.

All things need to be well cooked prior to blending (meat obviously, but also the veg) since raw or undercooked veggies are not good with the slowness.  There’s a real danger than the vegetable fibers will stick around, accumulate, and form a plug of sorts.  Sounds awful, right?  So thank god for a blender that can turn the vegetables into a liquid so smooth it runs through my finest sieve!  Boy, what it does to a smoothie is amazing.  It’s a pricey blender.  but you know what else is pricey?  Missing work, ER trips, doctors’ visits….and then there’s the incalculable value of just not feeling like total hell.  So we found it at a (relatively) decent price and we sprung for it.  Given that I can’t eat much more than pudding consistency, I think it’s worth it.

Here’s hoping that keeping up the calories will help.  I know not having enough hurts.

Leave a Comment
by dyspatient on June 10, 2013  •  Permalink
Posted in acutely ill, doing something stupid, talking to healthy people
Tagged , , , , , , ,

Posted by dyspatient on June 10, 2013

http://badturns.wordpress.com/2013/06/10/blending-in/

Processing

Sometimes I think I need the affective equivalent of the Mac OS spinning pinwheel or the Windows hourglass to use when I am in one of those situations that taxes my resources way way way beyond their capacity.  A message that says “This person has become unresponsive.  Do you want to wait or force quit?”  Or in the case of yesterday’s dealings with the insurance company and my primary care’s office/billing coordinator, “A fatal error has occurred.  Out of patience.  Shutting down.”

It would spare me the pain of having to try to explain what I’m trying to explain while also trying to explain my processing.  Which I will do.  At length.  Because, to continue the computer analogy, I have a somewhat quirky operating system courtesy of my very dysfunctional upbringing.  I’m like the old Dell in the corner, the one with all that memory but which has an old crappy processor and is running Windows Vista.  Sure, I have some really cool programs but if you tax my resources by opening up too many browser windows running all kinds of flash, I have nothing left for the simple operations like switching tasks appropriately or, oh I don’t know, being able to handle your choice to insert some clip art into a Word document.

Yesterday was a very taxing day.  It’s been a taxing week, with a long prodrome.  This week, I had a conference way out in the Western part of Northeast State that my boss, when she was feeling pissy with me back in March, basically insisted I go to.  Then Wednesday through Friday is another conference, which I am presenting a nearly 2 hour workshop/lecture at.  And next week is another conference.  On top of all of this, I have a few fires that keep popping up at work…last minute “OMG” type stuff that has to get done or at least considerably started now now now.  Oh and all the normal stuff that I do for my job too.  I am doing all of this juggling on between 850 and 1100 calories a day – 1100 is a GOOD day and is only accomplished with significant time, effort, and on days when I’m out of the house, extra weight because wherever I am going, I have to bring my own food or run the very high risk that I will have nothing at all to eat.

This does not make for a happy, well adjusted set of responses to stressors.

So when my health insurance company called me after part one of the week’s three day conference to tell me that oh they changed their minds (again) and I  can’t see my primary care as a primary care because my doctor’s office either can’t or refuses to bill as a primary care for me, I was not in an ideal position to handle that.

I’ve been dealing with this particular issue for months.  I have several pages of typed notes.  And among all of it, the one person I have NOT been able to connect with is my doctor’s billing/office manager.  I left her a message a few weeks ago asking, as recommended by the insurance company, if she can tell me whether my primary care CAN bill as a primary care with this insurance company. She called back….oh it was a few days later I’m sure, and left a message that did not at all answer my question.  She answered a different question, the one the insurance company always starts with, and which I know from miserable experience that you have to press the largely not very with it people who you first get on the phone when you call Big Crappy insurance to get them to even understand what you are asking.

Here’s the background on the plan and the conundrum.

  • My plan has two tiers.  There’s what we can call the basic network of providers and a preferred network of providers.  All of them are in Big Crappy Big Shot insurance network, just some are also in Big Ass Teaching Hospital Preferred Network too – this distinction makes the two tiers of coverage/billing/copay.
  • If you see a specialist in Big Crappy Big Shot network who is also in Big Ass Teaching Hospital network, you pay $15 as a copay.
  • If you see a specialist who is just in Big Crappy Big Shot network but NOT at or affiliated with Big Ass Teaching Hospital, you pay $40.
  • Moreover, the plan I have does not REQUIRE a primary care, but it does allow it.  A primary care in Big Crappy Big Shot network can bill as such and can therefore charge a $15 copay for primary care visits.  And, trivially (from a logic perspective) a primary care in Big Crappy network who is also in Big Ass Teaching Hospital network can charge a $15 copay because even if they are billing as a specialist and not a primary care, it’s only going to be $15.

Ok.  Got it?

So my doctor is in the Big Crappy Big Shot network and is not in the Big Ass Teaching Hospital network.  I consider him my primary care, he considers himself as my primary care, and he is who I see for my primary care.  He does have a double specialty but in my state with the primary care shortage, the doc who you see for primary care can have a specialty that is not traditionally one of the primary care specialties.  I double checked this with Big Crappy Big Shot healthplan in one of the very early phone calls.  So, I should, theoretically, be able to see my guy as a primary care and have him bill both the insurance company and me as an in Big Crappy network primary care.  I.e. I should have a $15 copay.  And yet it keeps coming to me as a $40 copay, suggesting that he is billing as a non-preferred specialist.

A reasonable question here is does my doctor not have a primary care contract/privileges with this insurance company or is there just some mistake in how it is getting processed in the billing cycle.  What the insurance company keeps thinking I am asking and which I have to break through every single time we talk about it is “what is my copay to see a specialist who is in Big Crappy but not in Big Ass Teaching Hospital network for a specialist visit?”  Why the fat frickity frick would I be asking that?  That is easily answered.  It is very clear.  I would not spend hours trying to clear that up.

The insurance company tells me that the bills coming in from my primary care visits to this doctor are coming in from this doc’s office coded for specialist.  Hence the $40 copay.  ”Ok, well, can they bill for him as a primary care in your plan?” I ask…and I have to ask it alot since I’ve been through three rounds of laying this all out, then getting to the point where I can ask that question, then told they have to research it and call me back, then called back with an answer that either isn’t an answer or, as I said, isn’t an answer to that question.  Yesterday, I spoke with someone at Big Crappy who generally gets the issue and who I have to spend far less time setting it up for.  She tells me that I should call the doc’s office and find out if they just don’t bill as a primary care.  ”Does he have a primary care contract with you?” I ask.  She doesn’t know, provider services would but I can’t call them.  My doctor’s office should know this, she tells me.

So back to the doctor’s office and the billing manager.  I left this question for her a few weeks ago.  She called me back a little while after I left that initial message.  Instead of answering my question about whether my doc can bill as a primary care in Big Crappy Big Shot insurance, she says in the voicemail she left: “Your insurance doesn’t require you to have a primary care.  The reason for the $40 copay is that if you see  a specialist who is not in the preferred network, it’s $40 because you have a tiered plan.”  Ah, so she answered the dumb question.  I did not blame her for the dumbness, because I know that the folks at Big Crappy will assume that any question about copays is THAT question about copays.  I call her back that day and I get her voicemail.  I was on a short break at a conference (yes, another), and so I had to speak quickly and concisely.  I thanked her for calling them and explained that unfortunately Big Crappy didn’t answer the question I actually had, which was etc. and yadda yadda and whatnot.  I wait.  She did not call me back.  This takes us to yesterday.  Yesterday, the Big Crappy people follow up again telling me that all of my bills from the doc in question are being submitted from his office as specialist visits, not primary care and that I need to ask the primary care’s office about whether he can bill as a primary care with them.  Big Crappy tells me that the doctor or his billing manager should know this and if they don’t, they can call provider services.  Big Crappy insurance gives me the provider services number too.

So I call the office manager yesterday.  I leave another message.  I sound brittle, because I’m trying really hard not to sound as infuriated and frustrated and just plain EXHAUSTED as I am.  I realize as I am leaving this message that maybe the reason why she hasn’t replied to my clarified question that I left her a few weeks ago is that she might have been on vacation or out.  I call the main number and ask.  ”Oh she’s been in and out.  I’ll tell her you called.” the secretary tells me.  ”Uh, ok.” I say, realizing then that this means the billing coordinator has just been blowing me off, probably assuming she answered my question and not interested in re-answering it or explaining it.  So I add “can you let her know that I did get her message but I did have a follow up question and that’s what I’m calling about?”  Yes, says the secretary.

The office manager calls me and from the start, she’s got a chip on her shoulder.  I try very very very hard to work with her, but it is clear that she feels that she has put in more than enough time on this.  As she is explaining it though, it’s clear that she’s still answering the wrong question.  So I try to let her know, and believe me, I try gently, that I appreciate the effort but that I think the insurance company didn’t understand the question.  She says that my doctor can be a primary care with my plan, but that with my plan, I don’t NEED to have a primary care, and that she only has one provider number for my doctor.  I say that I know that I don’t have to have a primary care, but I can have one…and say “the problem is, there’s a difference between ‘need’ and ‘can’ here…” and I was going to finish that sentence with “that the insurance company seems to overlook when they are answering questions about primary care for this plan” but she cut me off (about the 5th time she interrupted) and said “Oh well I’m sorry that my understanding of the English language is so bad that I apparently don’t know the difference.”

Boy, that escalated quickly.

There is just no need for that sort of shitty attitude.  I don’t tell her this (5 years ago, I would have).  I say “It sounds like you are offended, and I think you think I was insulting you – is that accurate?  Are you offended?”  ”Yes” she said sulkily.  ”It really wasn’t my intention.  I don’t think that you don’t understand the difference, I think the insurance company is playing games with words here, and I just need some help breaking through that.”

I think I deserve a fucking medal for being so god damned nice about her shitty attitude.  And mind you, this is on a grand total of about 200 calories at that point for the whole day.

So I’m still processing this shit.  I just really don’t know how to proceed or where to file this away in my brain so that it doesn’t alternately piss me off and distress me greatly.  I need my primary care to be a part of my team, on my side to help me manage elements of living with an evolving, chronic illness.  It’s already tough enough that the systemic barriers between doctors’ offices and health care networks, on top of the historic culture of medicine, actively prevent collaboration between care providers.  Add to it leaving the patient out to hang on dealing with the insurance company and billing and you’ve got something that is just so unbelievably toxic.  While I process, I think I need to hang up the “fatal error” sign, spin the pinwheel, and just let people know that all of my resources are otherwise engaged so please don’t ask me to open up another tab in facebook or you’re gonna get blue screened.

6 Comments
by dyspatient on June 6, 2013  •  Permalink
Posted in acutely ill, B.A.T.H., D.D.D., doing something stupid, talking to doctor people, talking to insurance people, wtf
Tagged , ,

Posted by dyspatient on June 6, 2013

http://badturns.wordpress.com/2013/06/06/processing/

keeping cool

It’s hot here in the suburbs of Big Old Historic Northeastern City.  Bug sightings are common now and I’m reacting to every stray hair or unexpected touch on my skin with alarm….it only takes seeing one of those nasty centipedes to put me into a heightened bug paranoid state….I’ve seen three in the last week and a half, including one doing the backstroke in the bathroom sink!  The cat has taken to spending her evenings in the kitchen, parking her furry butt in front of the kitchen sink (properly, in front of the cabinet below the sink). It gives her a view of the back door, bathroom, and light colored kitchen floor, where she can chase down and gobble up any of these little nasties that try to scramble across the floor.  I watched her track and nail a mosquito a few nights ago.  She got much praise.

The warm weather brings not just bugs but migraines and a return to the super low blood pressures.  Yesterday morning my BP was 80/56.  Evening wasn’t much better, managed to get it up to 85/59.  The brain does not work well with such low blood pressure, so yesterday was a series of backtracking to retrieve things, redoings, and all around thwartiness.

I bought some more popsicle molds.  I had another set that I got a few years ago but they got used for coffee (mmmmmm) popsicles and they aren’t going to be much use for anything but that now.  These are for fruity creamy popsicles.  Very excited.  Especially since it is impossible to cook in this heat, so it’ll be nice to have some snacks.  Speaking of smoothies, managed to grab a few pictures.

Both super delicious and nice warm weather food. I’m still considering trying the coconut milk ice cream again.  I have pause for two reasons.  One:  high fat content, and that’s not good for gastric emptying.  Two:  I did try coconut milk ice cream treats last summer, they were these chocolate and nut coated things.  I think I was allergic to something in them, so I didn’t eat any more after the first try.  I’m not sure if what I reacted to was in the ice cream or in the coating.  For now, I’m doing ok with my blended low fat lactaid milk and ice. 

photo of glass with a shake.

Strawberry banana

photo of glass with shake and straw.

Ginger peach

4 Comments
by dyspatient on June 2, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , ,

Posted by dyspatient on June 2, 2013

http://badturns.wordpress.com/2013/06/02/keeping-cool/

Peachy

Peach smoothie = super yummy.  I basically made a slightly less banana-y banana one and added two of those little cups of diced peaches you can buy at the store, plus a dash of ground ginger and a swirl of seedless strawberry puree.  I’d have taken a picture but it was too damned good to stop and snap a shot of.  Maybe the next time I make it, I’ll manage to take a picture before I chug it down.

The strawberry puree/sauce came out excellent.  I found that a fine wire mesh strainer was enough to take out the seeds, although I did buy some cheese cloth too in case the strainer didn’t catch them all.

Also on the menu this week is butternut squash soup (well strained of course).  Threw in some potatoes to give it a little body.  It’s not as good as the potato soup but then soup really does need to sit a day or so in the fridge to get to its best, I’ve found.

So yesterday I finally hit almost 1800 calories, for the first time in a few weeks.  I’m thrilled.  I know I’m still not getting a very nutritionally whole diet, but I think I’m doing a little better on the intake.  It’s a lot easier to do on the weekend.  I’ve been plotting out my food using an app for my iPhone and you can really see the weekends in terms of calories and weight.  I also bought a nice water pitcher that has a fruit infuser built in so I can make berry water at work. I do NOT drink enough hydrating liquids.  This I’ve known for a long time.  My husband says his brother’s the same way.  He once spoke to my husband about it, and it sounds exactly like me.  He says he just forgets to drink, then when he remembers that he hasn’t had anything to drink all day, he’s usually too busy to stop and go get something.

I would do juices and gatorade-type stuff except they absolutely kill my teeth.  Reflux has done a number on the enamel, which means they are porous and sensitive.  Even watered down, fruit juices mean I can barely stand to brush from the pain.  I drink them and ginger ale sparingly and with water or a ton of ice, and only through a straw.  Which leaves water.  But I do avoid it.  I don’t know why.  It’s largely psychological, habit, but also I do not experience thirst like other people I think.  People like my husband or sister, who both drink quite a bit of water, tell me that they get very thirsty if they go more than an hour or so without a drink.  Seriously?  I could go a day without anything to drink other than my morning coffee and if I didn’t remind myself to stop and get some damned fluids, I’d dehydrate myself right into a hypotensive episode.  WTF?  I can’t change whatever is causing that lack of thirst, but I can try to change the habit.  I decided that if I make water something that is more of a special drink, maybe I’d drink more because I do like my little rituals.  Hence the pitcher.

3 Comments
by dyspatient on May 27, 2013  •  Permalink
Posted in acutely ill
Tagged , , , ,

Posted by dyspatient on May 27, 2013

http://badturns.wordpress.com/2013/05/27/peachy/

back to the vitamins

Not pills this time.  I tried a couple of days of vitamin pills recently, bad bad bad.  I’m now on the hunt for a liquid vitamin that doesn’t taste god awful.  At the drug store, I found a pediatric brand.  It was horrible.  On the label, it says you can mix it with formula to improve your child’s tolerance.

There is nothing on earth that you could mix it with to improve tolerance. My 8 hours of truly foul vitamin burps convinced me that this thing is child abuse in a bottle.  There’s got to be something better.  And I’ve got to find it because I am down to 123 lbs. I was 132 on May 8th.

I’m tracking my calories, trying to figure out where I can supplement.  On my good days, I am managing to eat nearly 1200 calories and a large amount of that comes from empty sugary ginger ale. The big problem is meal size (necessarily very,very small) and what can be eaten during the day that is ok for me to eat.  I can’t eat dairy, so quick snacks of pudding and most shake-things are out.  I tried a “suitable for lactose intolerance” nutritional shake.  Also nasty, and strangely burny going down – left my mouth and throat feeling raw for hours after.  I have no idea what was in this excessively sweet chemical soup brought to you by Nestle, but I will not be doing that supplement again.  Like the liquid vitamins, the liquid nutritional supplements don’t come in sample sizes.  And neither is cheap.  I do much better on the weekends, when I can eat my home-made food frequently.  But until I  can bring in a full sized fridge, a blender, and a place to wash the many dishes I accumulate eating like this, I’m sort of stuck on work days eating a lot less than I want to and should eat.

My two favorite few things I’ve made which are very good, not high fat (fat slows down gastric emptying), and have some reasonable nutritional value are potato soup and banana smoothie.  I utterly suck at cooking from a recipe, or paying a hell of a lot of attention to quantities as I am making up a dish, so take the following amounts with a grain of salt (no pun intended).

Soup:

  • About a pound of potatoes, peeled
  • A few thin slices of onion
  • Half an apple, cored, peeled, and sliced thin
  • about 1 tsp olive oil, 1/2 tsp clarified butter (less lactose in clarified butter, I am to understand)
  • 2 cloves of garlic
  • Rubbed thyme
  • Rubbed parsley
  • About 6 cups of chicken broth (I used prepackaged low fat)
  • 1-2 cups lactose free reduced fat milk

Par boil potatoes in water.  While boiling:  saute onion and apple and roast the garlic cloves.  My no-fancy-dish roasting technique includes cutting the bottom off the unpeeled cloves, making a little cup out of a doubled up square of aluminum foil, pouring in a wee bit of olive oil, and then folding the foil up on itself.  Pop it in the oven at about 350 until you start smelling that sort of nutty garlic smell.

When the potatoes are mostly soft, I drained them, used a masher to partially mash up a few, and then put in half the chicken broth and returned it to a boil.  I added the spices, apple and onion, and garlic while it was doing this second boil.  Boil until the potato is completely falling apart.  Let it cool a bit, add some of the cold broth to help cool it down, then ladle it into a blender.  You can blend hot too, I just don’t recommend it for safety reasons.  You’ll probably have to blend in batches due to the quantity unless you have a crazy big blender.  Once you have it all blended up, put it back in the pot, add the rest of the broth, put in about a cup of lactose free 2% or less milk, and cook on a very low heat.

Makes a lot – like a really huge mixing bowl lot.  So use fewer potatoes and less broth and milk if you don’t want all that and don’t want to freeze it.  You’ll need to stir it with milk or broth as you reheat it after a few days, but this soup was quite tasty, and got me through the week.

Banana smoothie, the low fat version.  This one requires a bit of advanced planning to freeze the bananas:

  • Two medium sized bananas, frozen
  • Ice cubes
  • Reduced fat lactose free milk

To freeze the bananas, let them get very ripe.  How ripe?  I went with still some yellow visible but lots of brown spots.  Peel and break them into smaller chunks, and place in a zip lock.  Freeze.

For smoothie, add frozen bananas, about 4 ice cubes, and reduced fat lactose free milk to blender.  Blend it up!  If you want something that’s more like ice cream, go easy on the milk.  I wanted shake consistency, so I put in about 2 cups of milk.  It made two large glasses and it was quite good.  I’m thinking of making some strawberry syrup this weekend, no seeds, no thank you.  I don’t need that gunking up the gut.  But I’d like the flavor and the vitamins.

Which brings me back to vitamins.  I found a brand on Amazon that got decent reviews, so it’s ordered.  If it’s tolerable, I’ll let you know (with the name, because I think it’s important that this sort of info be shared).  Wish me luck.  And if you have any low fat, low fiber, lactose free liquid/soft solid diet recipes that you’d like to share, send them my way!

(planning to try this weekend:  ginger peach smoothie…)

6 Comments
by dyspatient on May 25, 2013  •  Permalink
Posted in acutely ill
Tagged , ,

Posted by dyspatient on May 25, 2013

http://badturns.wordpress.com/2013/05/25/back-to-the-vitamins/

with gravy!

In late March, I was told at work  that I had to start attending EVERY staff event for my department.  By “event”, I mean social as well as work.  Many of these things are inaccessible to me, and some of them are just plain inconvenient.  I’m not sure if this came from my boss or my boss’s boss.  I think the latter, although my boss was in a funk and certainly wasn’t very kind about the demand.

I say that to preface this story.  The other part of the preface is that I am starving.  This is because my gut and stomach symptoms have gone nuclear and taken my nutritional options with them.  I’m not responding to the meds I’ve gotten for gastroparesis.  And on top of it, the lower gut motility has been a disaster.  Landed me in the ER once, and two weeks later I had another round of the cramping passing out horrors. I have to be really careful about taking the meds I used to take for that pain because they slow down the gastric emptying even more.  For the most recent episode, the staggeringly bad pain did not last as long as it had the day I went to the ER, so I guess that’s something.  Something to be happy for. I’m not sure that I can take credit for having managed it better.  Just luck of the draw I think.  That’s how it feels anyhow.  Since meds and activity do not seem to be helping with the gastric symptoms, I am trying diet.  Liquids, no fiber, no raw veg or fruit (i.e. smoothie with strawberries is out), and oh yeah I’m lactose intolerant and I’m still trying not to have high nickel foods like chocolate since that has seemed to help with the mouth sores.  

This does not leave one a lot of options for food, and most of what it does leave is home made, hard to transport, is one more heavy thing in my bag which is already black-hole dense, requires refrigeration and reheating, and so hard to eat between meetings and social events at work stuff.  I’ve asked for a nutrition consult, and I will get one in mid June. In the meantime, I am at 125 lbs now, which is 7 lbs less than I was two weeks ago.  I downloaded a calorie app (not too bad, “My Plate“) so I can see how I’m doing.  I am not a good judge. At some point in the starvation mode, you kind of stop consciously thinking about food.  Last night, when  I did eventually eat, I added in a half a bowl of lactaid milk based vanilla pudding.  I figured that’d pump things up some…but it turns out not so much.  This is why I need a calorie app.  What delayed my eating last night was a social event at work.  We had to take someone out to dinner.  And dinner was about a half mile walk from the office, on a hot day, with coworkers who walk to fast, on rush hour pedestrian traffic-filled sidewalks of Big Northeastern City.  My knee and ankle stopped complying as we turned down the last cobblestone street (oh yeah, big old northeastern city) – at least I made it almost there before the pain started.  We got into the restaurant and my heart sunk when I saw that the host was leading our party up a flight of stairs.  Oh god.  Ok.  Up I went.  And around the corner there was….another flight of stairs.  Holy shit.  So there we sat, perched on the edge of the top-most level floor which was basically a large balcony with uneven floors.  My vertigo/dizzies have been acting up so I sat with my back to the edge – which pointed me squarely at the bar and TV.  

While my coworkers discussed what delicious items they would be ordering off the menu (which had no soups, no baked potato, so no food for me), my attention was drawn to the TV where a heaping spoon full of food was zoomed in on as it gently rotated just enough to let the chunks of food slowly slide off, followed by a drip of gravy.  ”Man, that looks good” I thought to myself, only to burst out laughing a second later when I realized it was a dog food commercial.

11 Comments
by dyspatient on May 17, 2013  •  Permalink
Posted in acutely ill, disability, doing something stupid, talking to healthy people
Tagged ,

Posted by dyspatient on May 17, 2013

http://badturns.wordpress.com/2013/05/17/with-gravy/

Toeing the line

Last night, my toe decided to just pop out of joint.  My poor husband, who’s been through quite a bit this past week including an exhaustive post-ER follow up visit yesterday with the GI doc, was unceremoniously awakened to the sound of me in pain.  It goes something like “fuck fuck fuck fuck fuck….” through gritted teeth.  ”It’s my toe.  It’s just my toe, I tried to get back in bed and it popped out.”  I wanted him to know it wasn’t something critical so he wouldn’t be too alarmed.  The reason I was up was that the reflux was beyond horrible, so I had to get another pillow, then back up onto the bed and YOINK! out went the second toe on my right foot.  I got it back in, waited a bit, hesitantly tucked myself under the covers, and then ZOINK out it went again, this time with prejudice.  That’s when the profanities started.  Then it began waving itself around like it was on a float at a parade.  Damned freakish long toe.  It’s amazing how high up it hurts when it does this.  So unpleasant.  I could understand if I had done something odd with it, like sit with it bent up under me (a typical posture) or try to pick something up off the floor – I have crazy monkey feet and those bendy joints, so I can pick things up with my feet and put them on counters, tables, etc. I don’t pick things up with my feet anymore though, my mantra has become “just because you CAN do that doesn’t mean you SHOULD do that”.  I believe all of us hypermobile types should get this inked onto our limbs.  But I did nothing strange.  All  I did was use it like a plain old toe.

Again, I say, so unpleasant.

Got a free late night leg and foot massage out of it, but as nice as that was, I’d have taken a night without that pain on top of everything else and without waking up my husband over that.

5 Comments
by dyspatient on May 9, 2013  •  Permalink
Posted in wtf
Tagged , ,

Posted by dyspatient on May 9, 2013

http://badturns.wordpress.com/2013/05/09/toeing-the-line/

tricky ol’gut

It’s the master of tricks.  My gut has a new one.  It’s called “lay there and don’t do anything.”  And just because that’s what’s going on up top, doesn’t mean that’s what’s up in the lower GI.  Oh no.  It does not.  My gastric emptying study, called “a little slow” and “slow” by an ER doc and my GI doctor (wait, what?  ER?  Yeah, I’ll get to that in a minute) is slow enough to count as officially gastroparetic (my made up adjectival form of “gastroparesis”).  But my lower GI needs to be told that part because it still has the raging kicking my ass in steel toed boots thing going on.

The result is not good.  The result is an increase in those puke and pass out from the pain on the can events.  I had one Wednesday.  It landed me in the ER.  I don’t go there lightly.  But the pain this time was more than I’ve had before.  More severe, more intense, more unrelenting.  And the passing out.  And the puking.  It just kept cycling.  Usually, it’s a couple of cycles of horribleness with some resting in between until things work themselves out. And  when I say “usually”, I mean that this has happened before but prior to this year, it was about once every couple of years.  Now, it’s a couple of times a month.  And this week, there was no rest period.  It was pain at an 8, to use the tired old rather useless pain scale, peaking to a 10.  At 10, I will vomit.  At a sustained 10, I will pass out.

So off to the ER.  Via ambulance, because my husband didn’t want to tempt fate on the “no passing out” streak I think.  I don’t blame him.  ”I’ve never seen you in that much pain” he said.  Yeah.  I’ve never had that much pain for that long.  And I’ve broken a limb, had endometriosis, adenomyosis, subluxations, and migraines.  I’m not a stranger to pain.

The ER wasn’t bad, the ride there was.  Rush hour traffic.  Bouncy no shocks ambulance ride.  I felt like someone had strapped me to a wagon and sent me down a rocky slope.

Best thing about the ER?  Two bags of fluids and IV antinausea meds.  I refused the narcotics.  The ER doc was really nice about it.  I explained, through gritted teeth, that I really thought a big gut slow down was behind this and I didn’t want to take something that would just slow it down more and put me in the same position in two days.  Please can I have some toradol?  Why yes, you can.

I slept for at least an hour straight after that.  Then waited for the GI doc to make her way down.  All total, I think I was there for about 7 hours but I really don’t know since I have no sense of what time I went in.  They’re crafty about where they place the clocks in the ER.  I woke up, felt like I needed to go again, tried, and the puking came roaring back.  So more antipuking meds for me.

GI doc came in and told me that the gastric  emptying test was abnormal (yes, I did see that in the online record that I checked after playing phone tag with you for over two weeks). I had done a lot of research on gastroparesis/delayed gastric emptying in the meantime.  I had been trying to take care of it myself and hoping that another crisis wouldn’t hit before I saw her again and was able to make a treatment plan.  Didn’t work.  So here’s the plan.

  • Low dose oral erythromycin
  • Possibly start reglan or domperidone as a rescue med (yes, you can take them that way, I am told)
  • Even more Zofran
  • A change from amitriptyline to nortriptyline
  • Modified diet

I also asked about my other meds.  She didn’t seem to think that any of them would be the culprit in these exacerbations.  I disagree, and I think my migraine meds are largely to blame.  Tizanidine and fioricet.  So I am going to see a new neurologist to try to find a less gastro-paralyzing migraine treatment protocol (my former neurologist left the state in a huff in October after sending a perplexing letter to his patients with oddly right-wing wording about the difficulties of being a provider in the Northeast.  The letter was dated a week prior to when I got it, and it gave me two weeks to come and get my records, which I didn’t have time to do in those two weeks.  Thanks guy!)   GI doc and I talked about diet, about small meals (I eat once a day on work days, and not much at that during the high nausea times….my ER bloodwork is showing signs of that practice.)  She was a little dismissive of the difficulties I’ve had finding a dairy free liquid supplement.  If/when I ever do get a meeting with the dietician, that is first on my list of things to talk about.  She also said I had to go low fat, even liquids, which goes against what I’ve read….that GP patients can usually tolerate fats in liquids.  And downplayed the “no fiber” thing.

Color me not delighted.  At the whole thing, but in very large part because of the sense I’m getting that she feels that drugs can do no wrong and that drugs alone will fix this.  I do not love that approach.  I am on a lot of meds.  One of the first things anyone with slow gastric emptying should do is examine their meds to see if there are any that might be responsible and try to find ways to modify them.

So there’s the new trick.  I’m exhausted from these.  I spent my recuperative day off yesterday hoping for a normal bowel movement and looking up new therapists.  Not a lot of luck on either front.  I have a list for the latter, but no one really jumps out as super in terms of specialty and location.  Location is important because if she is too tough to get to, I will not go when I am fatigued or when my routine is complicated by difficult to manage symptoms.  I do need one though.  This new trick has really hit me hard.

5 Comments
by dyspatient on May 3, 2013  •  Permalink
Posted in acutely ill, B.A.T.H., D.D.D., talking to doctor people
Tagged , , ,

Posted by dyspatient on May 3, 2013

http://badturns.wordpress.com/2013/05/03/tricky-olgut/

« Older Posts
Follow

Get every new post delivered to your Inbox.

Join 50 other followers