A little worse, a little better

Yesterday was tough.  Possibly due to needing to get out early, go somewhere brand new, see a psychiatrist (another new experience for me).  I think I’ve demonstrated that my cycling effect is not dependent on the presence of my husband.  I.e. he was home Saturday through Monday, and I was just as much of a wreck Saturday, Sunday, and Monday as I was Thursday and Friday.  And I’m still better at night.  It starts clearing up in the evening, by 8 I usually have a moment where I realize my arms no longer hurt, the pain in my neck and head has lifted (at least some, the headache does linger), I feel clearer, I am less consumed with dread and grief.  It’s delightful.  It’s not delightful to know that this pattern means tomorrow AM I will start all over, but I am trying to focus on the positive.  I.e. I get a break.  I will take it.  Oh god I will take it.

Today, this AM, was bad.  I vomited up the breakfast shake I had eaten, and the Ativan I had taken before things got too out of hand.  I had it in for about an hour, so I guess I got some Ativan, just not all 1 mg dose of the Ativan.  I decided I’d take another if I had the horrors coming on.  Ironically, I vomitted shortly after taking the Zofran that my GI doctor told me to take so I wouldn’t vomit.

She wants me to go back on the Reglan.  I said nope.  No ma’am.  Give me medical marijuana before you give me that poison again.  She says that she knows of patients who have had psych symptoms (she’s saying “depression”, this feels like depression plus) while on Reglan but that now that I’ve discontinued it, “it’s out of your system now, it’s a very short acting drug”.  I ask her but can’t it have long lasting or permanent effects on dopamine receptors, like what happens with tardive dyskinesia.  She says yes, but only with Tardive dyskinesia.  I tell her I have read several peer reviewed papers, case studies, with reports of enduring, long lasting psych effects from Reglan, even after it is withdrawn.  She makes a non-comittal response and says she wants to talk to my psychiatrist.  Oh that’ll go well.

It’s not like there’s a drug out there for this.  It’s not like there’s research on it, so who would know what to give anyhow.  I.e. these case studies could only offer speculation of what might have been going on with their patients, one theorizing that there were phases of too little and too much dopamine being taken up by DA2 receptors.  Without any research, and without clinical guidelines, and with a doctor (my GI) who is going to be disinclined to agree that the medication she increased indefinitely without telling me to be extra vigilant for those nasty side effects can cause enduring side effects even when it’s discontinued.

Yeah, I get that.  I’m not happy about it because it strikes me as obstructionist in terms of figuring out the best way to treat this.  Her refusal to consider any role played by the nearly two years of this med followed by 2.5 months at a high dose….on top of my existing moderate to episodically severe psych issues means that she’s just sitting on key pieces of the puzzle and that strikes me as irresponsible.  Perhaps out of protection for herself, or just out of stupidity.  I can’t ever tell with her how much of her screwing up over these 29 months she’s been my GI doctor is due to forgetfulness from overcommittedness, how much is legal ass-covering and general doctor posturing, and how much might be due to her just not being that bright.

My therapist called today, she spoke to the shrink.  This is good. I had seen my therapist not long after seeing the shrink yesterday, yesterday the very bad day, recall.  She (therapist) had asked about him (shrink).  My impression was that he was distrustful of the medical stuff I was telling him, and that perhaps he thought I was playing games with him.  He asked me straight out at one point “do YOU think you’re bipolar?”  Me?  No.  Never have.  Why do you ask?  Because I mentioned that my brother was….or was diagnosed as such, and takes a mood stabilizer along with an antidepressant (zoloft?  maybe)  It came up in the history.  But you know, why ask me that?  I notice he didn’t ask “Do YOU think you have PTSD?”  He did ask some questions about it that pissed me off though, but then being asked questions about it by a man, especially one who is doing such a fine job of maintaining a professional Distance (with a capital D) is going to piss me off.  Make me feel a little like “it’s none of your fucking business so shove off perv”.  But you keep a lid on that, that’s the appropriate thing to do.  I was able to be appropriate, at least appropriately not angry.

After the appointment was the same as after pretty much any new intake appointment where we talk about my psych as well as health history, in the context of a man who is Distant and Professional and who seems a little bit hassled by how Complicated I am.  That is to say, I am always in a bad mood after one of those appointments.  Yesterday, my baseline was shit anyhow, so the bad mood on top of that I think is why yesterday was so particularly, spectacularly bad.  Spectacularly bad means lots of crying and retching and throwing up and chewing myself up inside.  It means even looking at my pets, my husband, pictures that make me happy, things that give me comfort, make me feel deep, aching sorrow because I feel like I am looking at them from far away and they are gone, like I’m remembering a happier time during this deeply sorrowful one, like I’m remembering someone who died.  Yesterday was full of that.  That and then the concrete “articulated” fear that this feeling is not going away and will not, that this is permanent like so many new “tricks” my body learns, and that I have no energy and little composure that is needed to navigate the doctors I’d need to navigate to get help, that I have no faith in their help anyhow.  Then I start thinking about how sad it is for Aaron to have to do all this, to watch this, and that seems so unfair to him because I love him so much and I want to be happy and loving with him, not sobbing and wretching.

But today I’m doing better.  Now at least. This AM was tough.  I talked to my sister, to my friend on the phone. It was effortful.  Some of the things they said made me upset (my friend talking about a cat who is sleeping on her porch, a cat she can’t take in because she just took one in and now feels extra bad because maybe they were cat friends but this second cat is feral and won’t let my friend touch it…)  That made me cry.

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“you look hypermobile…”

This is what the physiatrist said to me yesterday in her office.  Oh how nice to have someone not question this because I no longer can do all my bendy things without hurting later.  Even the easy guided motions we did during the exam made me hurt about a half hour later.

“People like you, they don’t usually dislocate all the time as much as they sublux.  Subluxing is like a partial dislocation” she told me, moving my arm into a ridiculous position behind my back while checking my range of motion.  “Oh boy, yeah, look at that…you’re really flexible.”

The disappointing thing was that she had been saying PT with weight training and I was like “!”, but that was BEFORE she examined me.  Specifically, it was before she got to my hips and sacrum.  “This is….did you know your left hip is considerably higher than your right?” she asked.  “No, but I’m not surprised to hear it,” I told her.  “When I’m symptomatic, there is a lot of clicking and popping going on back there.”

As we were wrapping up the exam, she said “I don’t think PT would be good right now.  Until that’s fixed, it’ll actually just make things worse.” She has a chiropractor that they use, she said he is really good and doesn’t rack up the extra visits.  Ok, well I’ll give it a shot.  If it’ll have some promise at fixing the shockingly intense and enduring pain I get from things like walking or going over a bump in the car, I’m game.  I can’t imagine that this is a good thing, to have your hip all bent out of place.  Can’t imagine it’s good for your hips, pelvis, back, etc.  You get the picture.  She even drew me a picture, showing me how she thinks my hip is rotated.  Well now.  How come no one mentioned this before?  She also strongly recommended I start taking melatonin and magnesium supplements.  She says they’ll help with the pain sensitivity, but for me, honestly, better sleep would help with a lot of things.  When I don’t get enough sleep, I am spacey, and when I’m spacey, I move badly – then I hurt myself.  I also identified sleep deprivation as a significant migraine trigger for me many years ago, even back before I had them all the damned time.  Magnesium’s supposed to help with migraines too, so we’ll see.

Other doctor stuff this week…

I finally had my appointment with Neuro #3.  It went pretty well.  I’m finally (!) getting that ganglionic acetylcholine receptor antibody test I’ve been asking about for 6 months.  He’s the only person who has said he’d like to rule out what I would like to rule out (autoimmune autonomic ganglinopathy).  It can take months to get back, only two places in the country do it (Mayo is one, I think I knew this from my research, they had a really nice protocol for testing).  We talked about midodrine for the POTS, he thinks it might help my gut if I got my POTS under control.  Hm.  Maybe.  Mr. Patient was there with the magical ID badge too.  Mr. Patient asked “And would you just recommend treatment to her primary care or would you prescribe it yourself?”  Neuro #3 said “Oh no, I’d follow her.  And I’d want to follow you, I wouldn’t just prescribe.”  Good.  Finally a specialist who isn’t like “ok I did my thing now fuck off!”

My cousin, who is not related by blood but should be, had asked me the day I saw Neuro #2 back in September if I could recommend a good primary care because she was done wit hers.  I gave her my doc’s contact info.  Texted with her last night and she says he was great.  She also says he agrees that we must be blood relatives somehow, because not only do we sort of look alike and act alike, but we also have crazily similar medical stuff.  I’m glad that I could connect her to my primary care.  He doesn’t have all the answers but he’s smart and caring and I think he’s exactly who people like us need.  First on the list, he’s sending her to the geneticist I saw in 2012 after serend-hip-itously “subluxing” my hip at a visit with my primary care.

So that was my two days of doctor appointments this week.  Back to the office today, where I am scheduled to meet with HR to discuss the locking of the accessible entrance to my work building.  I’m not sure it’ll make a difference, but I am sure doing nothing will not.  So off I go, to charge another windmill!

phone it in – ADA discussion on Talk of the Nation TODAY!

From the disability service list I’m on:

“Talk of the Nation” will feature the ADA on Wednesday, July 28, at 2:00 P.M. eastern time.

The program title is “20 years after the ADA.” People with disabilities are encouraged to call in and describe the effect the ADA has had on their lives. The show will air on many local NPR radio stations at 2:00 P.M. eastern time tomorrow, July 28. To call in with your comments during the radio program, dial 800.989.8255.

Check your local NPR station for the exact time in your area.

a little help

This week, I’ve needed a lot of help.  I got rides in to work from my husband, rides home from two different co-workers, and today my little brother is going to drive me to the doctor.

I’m not so great about getting help.  I have a hard time convincing myself that people will not resent needing to help me.  I mean, one or two “favors” is one thing but every day?  Multiple times in a week?  I have this basic, deep rooted assumption that it will be too much.

I have had this for a long time. I’m not sure where it came from.  On reflection just now, I was thinking that the guy I was with before my current husband might be part of the cause.  This boy’s name was Tom.  I say “boy” because although he was only a few years younger than me, he had the maturity of a 18 year old.  An immature 18 year old.  When I got sick with Lyme, he went from freaked out to useless in pretty much no time.  The relationship staggered on for a few years like that, but by the time it ended, him and his useless, immaturity enabling family had decided that I was malingering.  They didn’t say that, they said I was “no fun”, a “granny”, and many other worse things in private I’m sure.  By the end, it had gotten so bad that I was being blamed for any conflict between Tom and his family, and I do mean any.  Tom failed a class (in grad school, you don’t fail classes) and he and his narcissistic father got into a fight about it.  As his dad hung up the phone on him, he yelled something about Tom having “a problem” in his relationship with me and that Tom “needed to fix it”.  Let me just say for the record, I had been nothing but deferential to Tom’s family initially.  It wasn’t until after they promised help with things like a move and two surgeries Tom had and then left us high and dry that I started to voice any objection to their behavior, and even then, I tried very hard not to put Tom in a position where I was pushing him to damn them all.  I was careful not to trash talk them, even when they had done something really, truly rotten.  And believe me, they did do really truly rotten things.

Now I should mention that this is the boy who had type 1 diabetes and who treated it like a chemistry experiment.  That is, he’d eat utter garbage but dose with insulin to “cover” for it.  I had a suspicion that this probably was not a great way to manage diabetes, but it was his life and his body and I’m all about the autonomy.  Or at least I was.  Right up until he got gallbladder disease which announced itself with a nasty bout of pancreatitis late one night.  He was admitted to the hospital after many hours in the ER with Wendell (I don’t recall the ER doc’s last name, just his first) the Wonder.  Wendell the Wonder loaded Tom up full of barium and sent him off for a CT scan – a probably unnecessary CT scan (no other films, no no, just the barium blockade and the extra high radiation exposure CT).  Wendell the Wonder kept Tom in the ER thinking his pain would recede and abnormal labs would resolve just because Wendell was paying attention to them.  No luck.  Tom remained ill.  The CT didn’t show anything interesting.  Tom was admitted.

Tom had a HIDA scan which, the very bad GI doctor informed us, was “within limits”.  The bad GI doctor diagnosed Tom with Gastroparesis Diabeticorum.  I wanted to say “golly doc, I can assign fancy Latin names to shit too.  How about this one?  ‘medicus blennus“‘  Long story short, Tom had gallbladder disease and it took a month and an MRI to diagnose it post discharge.  In the intervening month, Tom would eat like an idiot and ask me to excuse it.  I had already said “I think your gallbladder is fucked.  You get sick every time you have a high fat food.”  I made low to no fat foods for him.  I knocked myself out doing this, but the family fed him things like pasta primavera with cheese and cream sauce.  We’d go out for dinner and Tom would say “Do you think I can get a bacon cheeseburger?”  I finally had had it with this shit, and started saying “I think you should decide for yourself.  I think I don’t want to deal with you being sick all night tonight if you do eat it, so if it were up to me, no – you shouldn’t.  But it’s your body Tom, and clearly you want the bacon cheese burger.”  I was not being passive aggressive, I had been very clear with Tom about how worried it made me when he got sick.  A puking type 1 diabetic is not ok.  I was just completely frayed – I couldn’t understand why he would put this choice on me.  It’s like someone who is stumbling drunk holding up the car keys and saying “do you think I should drive?”  I mean, what are you supposed to say the fifth, sixth, and seventh time they do it?  What do you do when you keep saying “no, I don’t” but other more important people convince him that he’s fine, that it’s not a big deal, that to cave in and limit himself is a sign of weakness not just of body but of mind and basic worth?

During this time and beyond it, I was struggling with endometriosis and the Lyme Disease left overs.  I had doctor’s appointments.  I got sick at work and had to find a ride home.  I passed out.  I missed deadlines in my PhD program.  I knew I needed Tom’s help in the day to day, especially during high volume work times.  E.g., I was scheduling my preliminary exams (for the PhD) and I asked him what month would be good for him.  We get two weeks to take them.  He and I decided on a period when he said he would not be at high work load and could do more of the day to day like shopping and food prep.  “Ok,” I said, “but please don’t start your dissertation proposal until I’m done, ok?  Because I know if you do, you’ll be immersed in that and you won’t have time for food and stuff.”

My prelim time came and about 1/2 week before it, Tom lets it drop that he’s going to start writing his proposal.  His advisor had recommended he do so.  What about our deal?  Well it seems Tom didn’t remember it.  Or didn’t give a shit.  Or didn’t think I needed that much help.  Or thought he could do both.  What he claimed was to not recall, but I had noticed by that point that he “forgot” pretty much anything that was inconvenient to remember or which created the kinds of conflicts that learning to handle is part and parcel of being a grown up.

Our relationship had been strained by his not taking care of himself throughout the gallbladder period, by his family’s just god awful behavior, and by his “forgetting” so many things.  We didn’t fight about my needs and what they meant for us as a couple.  He just shut down.  Ultimately, I and my neediness were blamed for the problems in the relationship.  By “neediness” I mean practical, physical things but also my reaction to finding myself not only without help but supporting this overgrown boy during a time when, for the first time in my life, I did not have extra energy-based resources.

So, this years long experience has not helped my belief that I can need too much for people, that people can burn out, that stressors like a chronic, unexplained illness can create resentment and distance and fractures in what was – under better circumstances – a rather nice, rewarding relationship (and what it can do in the not nice, not otherwise rewarding relationships is another story entirely).  But I know that all this just plugged into an issue I had prior to getting Lyme and not getting better, prior to the endometriosis going into overdrive, prior to the chronic diarrhea and weight loss and malnutrition, prior to the sudden but now chronic hip pain.

I’m not totally sure what that issue is.  I suppose this is what therapy is for.

Today, my brother is taking time off of work to come take me to a doctor’s appointment that I am ambivalent about.  It’s to see a cardiologist.  I have seen a cardiologist before.  But the new PCP is chasing down leads and one of them goes to cardiology.  I’m doing it, and it may win me another day on a monitor or stress test or whatever.  I doubt that it will show anything though, so I’m having a hard time feeling really committed to this.  And I feel like I may be “wasting” a favor, I may be burning through what I can’t help but assume is a limited supply of good, helpful intentions from the people around me.

over did (over done part 2)

On Monday, my day off, I overdid it.  Sunday was lost to an electrical problem in my apartment – that meant, for example, no grocery shopping (refrigerator was off) and no co0king.  So on Monday, my day off, I took on a few of the things I didn’t get done on Sunday items.  And I overdid it.

On Friday, I got home early.  The whole department closed up early and I just couldn’t rally myself to (re)start working on a project that’s been waiting in the background.  I will work on it, I truly believe that, but not when I need to completely immerse myself in it for several hours and I only have one hour of time.  So I did a bunch of mundane, routine “housekeeping” tasks at work Friday afternoon and went home early.  Partly as a result of the low level guilt of not working on the bigger project, of leaving early although I didn’t really need to, and partly because I had put off cooking all the lovely food I had gotten at the supermarket on Monday (which I put off cooking because I was overdone Monday and Tuesday), on Friday when I got home, I cooked.  I cleaned.  I washed some delicates in the tub.

It was hot.  The start of the heatwave that is going to sit on top of us all this week.  I had the broiler going in the stove and had water for veggies and pasta going on the burners.  I took lots of breaks, sat in front of the AC in the living room, then back to the kitchen to deal with the food.  By the time my husband got home, I was totally wiped out.  “I made food!” I said.  Like that was worth doing all this stupid overdoing.

And I paid for it.  Friday night, as I was falling asleep, I started to have the dizzies.  The cat meowed pitifully just as I was dropping off to sleep and I woke up abruptly, scanning the room for him.  In my scanning, I was looking at the bedroom door and wondering why it looked wrong, then realized that I was not looking straight ahead (as I had thought) at the door to the hallway but looking to my right at the door to the closet.  It took a long time to straighten out the orientation of the room.  An unpleasantly long time.  And thus began a round of vertigo that has been with me all weekend.

Some time ago, my husband and I were talking about doing things that I usually don’t do.  He had mentioned that he was ok with me sometimes taking a chance and doing more – this is something I struggle with constantly – the lack of my old ability, of my old self sufficiency.  I used to be able to do it ALL.  And I liked that.  A lot.  Having to adjust to not being able to do it all is difficult.  I’m over the hump on it, I mean the worst part was many years ago.  Now, I don’t tend to break down crying as much or get as frustrated and blow up as much.  But now, I struggle more with feeling like my life is very small.  Sometimes I just don’t want to settle for that.  It was in this context that my husband mentioned his acceptance of my limits but also his willingness to help me if I try and fall.

“I think sometimes you need to try it, even if for no reason other than to remind yourself that the limits you impose are for a good reason,”.  He’s right.  This week has been one big trial with some success but with a big price tag.  I honestly think it’s going to take me at least two weeks to recover from all the overdoing, two weeks of carefully measured out energy, of religiously adhered to schedules and routines, of enforced bed times, of eating when I need to whether I want to or not, of pushing fluids even though generally I have very little thirst at all and end up peeing out what I drink in about 20 minutes (I swear it’s like I have a hose that goes from my esophagus directly to my bladder, bypassing everything on the way).  But he is correct in that there is a small gain here and it’s reassurance that when I say “No I can’t do that” it’s for a very good reason.  It’s not just me wimping out or being lazy.  It’s me being judicious, it’s me wanting energy for the day to day, which means that no I may not be able to do this or that today if I want to be able to get up and drive myself to work tomorrow.

Balancing

Since I’m moving sloooow this morning, I thought I’d poke around in the blogosphere, and hey, looky here!  I just ran across a pretty neat blog called “FWD/Forward: Feminists with Disabilities For A Way Forward” via a great post by contributor Chally, which touches on some topics I’ve had quite a bit of experience with as both a teacher, a student, and a college staff member.  What is “doing fine” for someone with a chronic illness based disability?  Especially with one that robs you of your energy.  Some interesting questions are raised:  Do you go for the flat out pace that is expected (demanded) of people by society?  Do you pare it down and use your bone deep understanding of personal pacing and balance to ward off feelings of not living up and of being judged internally and externally for it?

I add the category of family to the mix.  As women, we are expected to accommodate – the primary zone for this agreeable accommodation is family (not because of nature, but because despite advances of women outside the home, western social norms insist that home and family are “woman’s domains” – any doubt of this can readily be tested:  who plans birthday and holiday celebrations?  Who plans meals, grocery shopping, cleaning?  Yes, men do “help” more often but until they stop “helping” and just “do”, I argue that these areas are seen by men and women as primarily responsibilities of the woman).  So how do you find your balance among these areas of responsibility, of demand, where you as a student, worker, mother, daughter in law, wife are expected to live at a pace defined by the ability to consistently and (minimally) compliantly rise to an impossible level of work?

No, seriously.  That’s not a rhetorical question.  How do you do it?

weighing in

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

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

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

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

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

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

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

Well well (not not)

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

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

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

Yes, I’m a horrible person.  Yep.

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

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

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

Good site

Hey, it’s another cool site. Bad Cripple by blogger William Peace. So far, I’ve spent most of my time on there reading up on his experiences with the Obama campaign and accessibility. It’s making me want to go and fix up all my posts with pix (I’m certain I don’t always provide alternate text). I’m looking forward to reading more by William and I encourage you to check out his excellent blog.

foodless in CT

I have a meeting set up with a temp agency today and I thought it would be good if I weren’t passing out in their bathroom. Hence, no breakfast for me this morning. I don’t like skipping meals, it makes me irritable and lethargic but last night was horrible. I was about 10 minutes into dinner when I got massive cramping lower down. I stopped eating and took a bentyl (my first one). I ate a little more when the first wave of cramping subsided but my appetite finally gave up when the pain started again, and again. Within an hour I was in the bathroom drenched in sweat, huddled on the toilet, retching into the trash-can and hoping the whole thing would just get over with. I lose track of time when things get that bad – it felt like an hour but I think the whole thing lasted only about a half hour acutely. When it was over, I felt deflated, sweat-soggy, cold and shaky for the rest of the night. Times like that, yes I will happily take a Donnatal…well, a quarter of a Donnatal.

And this, in a nutshell, is a BIG part of why my life is so very small now. Even if it’s not a bad day re: joint pain, fatigue, migraine, and endo/etc., you just can’t go anywhere if experience indicates that any gut cramps might turn into those gut cramps. Oh I suppose I could go places and just not eat, however while the no-food strategy works for the duration of a job interview, it is not a practical option in most situations. So I prefer to eat and thus stay close to home or at home. Ideally, I also prefer to be able to take the medicine I need to help ensure that I at least won’t pass out from pain when my gut is launching quasi-digested food into the toilet 5 to 8 times a day. But without the hyoscyamine, I’m stuck fiddling with new meds and hoping one of them (timed right and taken at a high enough dose) works right. For the rest of this week, I’m planning to premedicate with the bentyl (20 mg instead of 10) rather than wait and risk another one of those horrible episodes.

In the meantime, I present for your reading pleasure a relevant (for me at least) abstract.

Simrén M, Abrahamsson H, Svedlund J, Björnsson ES. 2001. Quality of life in patients with irritable bowel syndrome seen in referral centers versus primary care: the impact of gender and predominant bowel pattern. Scand J Gastroenterol. 36(5):545-52.

BACKGROUND: Quality of life (QOL) is reduced in patients with irritable bowel syndrome (IBS) and little is known about differences in QOL in relation to referral status, gender and predominant bowel pattern in IBS patients. This study aimed to explore these relationships. METHODS: 343 patients with IBS according to the Rome I criteria (251 females, 92 males) completed five different self-administered questionnaires to evaluate QOL. There were 119 patients with diarrhea-predominant IBS (IBS-D), 93 with constipation-predominant IBS (IBS-C) and 131 with alternating constipation and diarrhea (IBS-A). The study group comprised 209 hospital outpatients and 134 primary care patients. The questionnaires were mailed to the patients with an overall response rate of 88%. RESULTS: QOL was reduced in hospital outpatients compared to primary care patients, but only in females. IBS subgroup (IBS-D), physical fatigue and general health independently predicted referral to a gastroenterologist. Females had lower QOL than males. No differences, except in severity of diarrhea and constipation, were observed between IBS subgroups. Perceived fatigue was related to well-being, psychological and gastrointestinal symptoms. Independent predictors for fatigue were depression, trait anxiety, general health and vitality, along with eating dysfunction and female sex. CONCLUSION: IBS female patients seen in referral centers versus primary care is a highly selected group with reduced QOL. QOL in IBS is affected by gender, but not by subgroup. Our findings have implications for the generalizability of results in IBS trials. Fatigue is a common symptom in IBS that correlates to general well-being and psychological and subjective gastrointestinal symptoms.