No help

GI doc called back Monday, after I faxed her a three page note updating her on what’s been going on the last few weeks and asking her basically “wtf do we do now?”

She was not much help.  She said, in regards to my big weight loss and liquid only diet (on which I am still very gastroparesis symptomatic) “ok, well that works for you so just stick with that”.  Yeah, um, how about some nutritional counseling?  My diet just shifted dramatically, it’s clearly insufficient in a macro-scale since I’m losing weight on it, and god only knows how my micro-nutrition is doing.  But nope, she doesn’t think about or care about that.  Then she went on to her “let’s try Lyrica” thing again.  “So I know you proposed that as a neuromodulator for pain due to the idea that it’s visceral hypersensitivity, but the pain is not my most limiting upper GI symptom right now, right now the things that are making it hard for me to eat and drink enough are getting full too quickly, bloating, horrible heartburn/reflux, and regurgitating food.  So what of those symptoms is the Lyrica supposed to help with?” I asked.

“all of them” she said.

Pardon me, but I believe that is a load of shit.

The most I could find was one tiny study done using pregabalin (lyrica) to modulate esophageal pain thresholds in (a very small number of normal, healthy) subjects who were first “hypersensitized” to pain using an acid infusion: Randomised clinical trial: pregabalin attenuates the development of acid-induced oesophageal hypersensitivity in healthy volunteers – a placebo-controlled study (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2011.04955.x/full).  Go check it out.  The full text is online.

Even with a charitable view that the results of this study are meaningful, valid, and generalizable beyond the tiny little sample they used (and to the unhealthy people who would be prescribed Lyrica for esophageal pain due to supposed hypersensitivity resulting from acid reflux), they just flat out don’t pertain to the limiting, NON-pain symptoms I described to my GI doctor.

So anyhow, I said fine, I’ll try it. She said she’d call it in that night (Monday) or first thing Tuesday.  We confirm my pharmacy.  She says to try it for a few days and then call her at the end of the week to let her know how it’s going.  Tuesday, I wait until early afternoon, haven’t heard from the pharmacy.  So I call the pharmacy, nope, they don’t have a script from her.  I call her office.  They don’t call back.  Wednesday, I call the pharmacy again, they don’t have it yet.  I call her office and talk to her (awful) receptionist.  She says she has to ask the doctor, calls me back and says the doctor mistakenly called the script in to my mail order pharmacy service, which I have NEVER used.  She says they will send it in to the right pharmacy, I confirm the right one with her.  I wait four hours and nothing.  Call the pharmacy, they haven’t received it.  I call the doctor’s office and leave a polite but terse message saying I was supposed to start this Tuesday, blah blah blah.  I get a call from the pharmacy an hour later, it’s ready.

I started it Wednesday night.  It knocked me on my ass.  So sedated, plus a screaming occipital headache the likes of which I have never had, and I have migraines and once had a concussion.  This was INTENSE.  Thankfully, I was so druggily sedated that I fell asleep fast.  Woke up the next AM with nausea, which is atypical for me even right now.  My “baseline” right now (when I’m not taking vomit-inducing zoloft, motility slowing mirtazipine, or haven’t given myself gastritis from salt tablets and fruit juice) is to wake up with an OK stomach that gets progressively worse as I put food into it during the day.  I had to break down and take a half an ativan for the nausea in the AM and another in the PM.  While the headache has eased up on subsequent doses, the nausea has gotten worse.  The sleep has as well.  The second and third nights on it, it sedated me but I woke up very early (like 4:00 AM) and stayed awake.  So that’s not fun.  It’s similar to my pattern on Gabapentin.  Oh and the lyrica is constipating me.

So here’s the icing on the cake.  I called my GI doctor on Friday even though I had only taken two doses at that point, but because we were going to check in at the end of the week.  She never called back. I’d have preferred to consult with her first for compliance’s sake, but since she can’t be bothered to return a frikkin call she told me to make, I’m just d/cing this drug myself today.  It gave me bad nausea last night and today I spent the first few hours out of bed feeling like I was going to faint.

I’m so done with her.  I hate finding new doctors, and finding new GI doctors is like extra hateful, but I will do it.  I know it’s difficult, I know I’m a complex patient, I know that I’ve pretty much exhausted all my options for medication for gastric motility.  I know finding a miracle worker is not going to happen.  But I am not looking for a miracle worker. I’m a realist.  I am looking for a knowledgable, creative, supportive ally in my fight to stay well nourished and to have some quality of life. She is not that.

Been a while.

I haven’t even looked back to see when I last posted here.  If I had to guess, I’d say this time last year?  That was when all the shit hit the fan, health-work-life wise.  Let’s see, the cat was sick, I was out on leave for vertigo while my boss was on maternity leave, which she started immediately after she and I had a falling out over her wanting me to do a job at work that I was having a tough time doing.  My disclosure of that was insufficient, she sent me and the whole office some pretty pissy emails around that, including a passive aggressive one to me rescinding support she had promised in the coming months, leaving me to do a job that she knew I couldn’t do on my own.

This time last year, I was waiting for the other shoe to drop.  It did.

While my boss was out on leave, she was nevertheless in communication with everyone else in my office, everyone but me.  She went to the conference I missed (vertigo, last June), and was mad that I wasn’t there.  How do I know?  She cut me out of a meeting that was in my area, that had been requested with me initially and which I had opened up to her and another member of our office.  She just -snip- stopped cc’ing me in the middle of planning.  I found out later in June that the planning had continued without me.

She was about to come back from leave and it turned out she had to rush to do our employee evaluations, they were using a new process.  Ok, so she sent me and my coworker emails telling us to send in the metrics we thought we should be evaluated on.  I did.  She ignored it, within moments of my sending it she sent something back to me that was totally different, and which…and here’s the rub…included the job I had told her in April that I couldn’t do.  Even got an official accommodation around it, but they wrote the accommodation so specifically that it left her wiggle room.  And wiggle she did.

I ended up leaving my job.  I complained to HR, to my boss’s boss.  I got a deep lack of support.  The idea of going into the Fall semester knowing I no longer had support, knowing my boss was now out to get me again (and please, I’m not being dramatic, she was a very vindictive and tantrumy type….the last time she was this mad at me she had revised my job entirely and put me on an attendance plan, instituted a policy that I had to attend every departmental social event, no I’m not making that up….it was in my HR file…she yelled at me and stomped around the office for weeks.  It was terrifying for someone with PTSD, struggling to work full time with serious health issues).

So I left.

And it’s been nearly a year.

And I’m having anniversary effects.  Because this was a really bad time of year last year.

I’d like to say that this year has been a nurturing calm one full of recovery and self discovery. That’s not the case. I’m depressed, officially now it seems.  It’s not like my health problems went away, but now I don’t have to drag myself to work.  Which is good, because it was killing me, mentally and physically to do that.  But now I have quite a bit of unstructured time.  When I feel very bad, this is ok because I need that time to rest and recover.  But occasionally, I’ll have a stretch of days or even weeks where I don’t feel VERY bad, or where I feel mostly ok aside from a few acute issues (like nearly passing out in the bathroom after eating last week…makes me thankful I’m not working) and I don’t do well with unstructured time.

I’ve tried structuring it but it’s not like I have boundless energy for activities.  That’s the issue, if I had that energy or the guarantee that this day or that wouldn’t be a sick day, I’d be working by god.  But I don’t, so I can’t work.  But that also means it’s hard to make plans, and to keep plans.  For example, I tried going to Chinese New Year this past Winter with a woman I’ve been trying to become friends with. A fluctuating round of nausea (intense, soul crushing nausea) reared up and halted that at the last minute.  I was so disappointed.  I cried.  I don’t cry often anymore about my health, but there are some things that’ll do it.  A new and frightening symptom, a symptom that suddenly gets and stays worse.  Having made plans finally after the snow from one of the many (many!) storms we had had receded a bit only to have to cancel them, knowing I’d soon have to hole up for another two or three record storms.  That did it.

So why am I officially depressed?  It’s been a year of this: It’s been lots of doctors’ appointments and you know how I hate those.  It’s been applying for disability, an inherently degrading and hopelessness inducing process which also btw means you can’t take doctor breaks.  if someone sends you to a specialist, you have to go or it looks like you don’t care about your health, aren’t taking it seriously, so why should the disability people?  They apparently don’t know about doctor fatigue, both the doctor and patient side of it.  It’s been too much unstructured time but not enough health to make and keep plans to structure it at all.  It’s because it was a brutal winter here near big historic northeastern US city.  It’s because it’s June again, and this time last year was so awful.  It’s because the last five years at work have used up all that I had to give – and before that was grad school and my division head telling me that he didn’t think it would be “fair” to even consider health accommodations.  It’s too many years of pushing through and past and down and going going going to get things done – and now that I have space to stop and breath, I see that I have nothing left for me.  No social life, no chance for one, no ability to even do a great amount of volunteering (I did try in the Fall – I taught a class a the local public library, but health problems meant I had to cancel and reschedule three out of only 6 classes.  This Spring, they decided they didn’t want me to teach a class again, not surprisingly – I’m tutoring but no class).

I’m surviving right now, but that’s about all.

day 1

First day back after my leave for surgery.  It’s going to be a doozie.  I was told on Sunday that there is an event in my workspace that will necessitate my working elsewhere for the day.  This happens with some regularity, on average, once a month.  Regardless of the validity of these “needs” for my space, the fact remains they exist and there’s not much I can do about them without pissing off my coworkers.  This need was a significant part of why I filed accommodation requests with my employer.  And they turned down most of the requests – no offers for altern_atives, just no.  But one that they did not was arranging an alternate set up for me in my building where I could work without getting sick when the need arose for me to work other than at my regular spot.

So…guess what hasn’t yet been set up?  If you guessed “alternativework station” you are correct, you win a complaint to the EEOC!

Ah the joys of filling out governmental forms.

I had been planning to wait to see how HR handled the remaining two accommodation requests – these are the ones for which they asked for “more documentation” from my doctor.  I got it, sent it in mid March.  Nothing.  Nada.  Plans for meetings canceled and rescheduled many times.  The most recent rescheduled time is for the end of May.  I was going to wait, but HR got involved in my inquiry about where I could work today and said that they had no obligation to provide this alternative space.  Uh, really?  Did you read the same irritating letter from you that I did?  Oh wait, you wrote the irritating letter.  So I guess I’m just on crazy pills, right guys?

And so it begins.  I am busily writing up this complaint.  Even if it goes nowhere, I want there to be a record of a complaint.  I want them to get notice of the complaint, and I want it to reflect on the new staff member in HR who has done such a bang up job of processing my requests.  I am thinking of reaching out to two other employees who I know have been mistreated by our employer for disability accommodation requests and subject to blatant discrimination.  There is room on the form for that.

What a welcome back to work!

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.

great idea!

Just reading the news this AM as I wait to do what I need to do with various, er, containers.

Here’s an excerpt from an interesting story – what a great idea!
He’s not a patient, but plays one for class
Students studying geriatrics in Maine live for weeks in N.E. nursing homes
By June Q. Wu
Globe Correspondent / July 19, 2010
Full story at the Boston Globe

Matthew Sharbaugh checked himself into a nursing home recently, complaining of chronic pulmonary obstructive disease, congestive heart failure, and right-side weakness from a recent stroke. He is 24.

Sharbaugh had signed away his youth for the next 12 days to play the part of an 85-year-old man in ailing health at the Old Soldiers’ Home in Chelsea.

A second-year student at the University of New England College of Osteopathic Medicine in Biddeford, Maine, Sharbaugh is one of six students living in a New England nursing home this summer as part of the school’s Learning by Living experiment, founded in 2005 to provide students interested in geriatrics with firsthand experience of the care of the elderly. This year is the first the program has expanded to include a facility in the Boston area.

Sharbaugh, who keeps a daily journal chronicling his observations, said last week: “I never really noticed how hard it is to live like this. I just always thought of old people as grumpy people who are easily upset.’’

By his fourth day, Sharbaugh, of Simsbury, Conn., came to appreciate the patience needed to cope with the daily frustrations facing wheelchair users: a misplaced TV remote, a notice posted too high.

Adjusting to his new life took time. His wheelchair beeped alarmingly every time he tried getting up or shifting his weight. His diet of pureed foods did little to satisfy his appetite. The first time he showered, he was unable to turn his wheelchair and ended up washing just the left side of his body.

Going to the bathroom became an art. With a twinge of shame, Sharbaugh learned to coordinate his bathroom trips with nurse shifts to avoid asking the same care provider for help more than once.

From his wheelchair, Sharbaugh also picks up on details that can enhance or detract from the quality of care for elderly patients.

He notes the importance of communicating at eye-level with the patient, of explaining medical procedures to the elderly and not simply to their adult children.

“It’s extremely difficult to hear the medical jargon and not know what it refers to,’’ Sharbaugh wrote in his journal. “When I have my practice, I will have to be sure to explain the patient’s care in terms that he or she will understand.’’

Established by his gerontology professor, Marilyn Gugliucci, Learning by Living is billed as the only program in the country that allows students to live for two weeks as patients in participating nursing homes, which willingly forgo the revenue, roughly $300 a day for 12 days, to support the initiative.

Gugliucci, who is the College of Osteopathic Medicine’s director of geriatric education and research, said she hopes to expand the program into a national fellowship for students interested in geriatrics.

….“There is a face and story behind every patient,’’ Sharbaugh wrote. “The patient should not be viewed by the conditions that ail them, but by the person beneath the disease.’’

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?

What I want

Found this kicking around on my hard drive from last year. I think this is a good thing for me to review before my appointment tomorrow.

What I don’t want: 

  1. Repeated tests if there are existing test results which can be used. 
  2. Referrals to specialists unless primary care physician is not able to conduct testing, procedure, diagnosis, or treatment for a specific condition or complaint.

 What I do want:

  1. Oversight and integration of diagnostics, diagnoses (or lack of), and treatment conducted by specialist. 
  2. A supportive attitude. 
  3. Understanding that I have a couple of long standing conditions and complaints some of which I am only seeking to have managed unless they change in frequency or severity. 
  4. Understanding that I am coming into this transition with a couple of existing complaints which I feel have not been adequately investigated up to this point.  Regarding these continuing issues, I welcome fresh ideas and even (warranted, reasonable) repeats of old ideas (see “What I don’t want, #1, above) if you think it will help identify or rule out something.  I am capable of accepting diagnoses like “Chronic Fatigue Syndrome”, IBS, or even “somatoform disorder” providing other likely causes have been ruled out (within reason) and you are not dismissive of the validity and impact of the subjective symptoms of these conditions. 
  5. Understanding that I am an empowered abuse survivor and as such, I have had years of psychotherapy regarding the effects the abuse has had on my emotional and social development, on my interpersonal interactions in my day to day life, on my self conception, on how I think others see me.  In general, I am a bit hypervigilant about perceived wrongs, injustices, and just plain unfairness.  My responses tend to take the form of “championing”.  I am very verbal about these feelings so you will likely get an earful if they start up.  I try to give the benefit of the doubt, at least initially.  I will forgive minor and really justifiable offenses along these lines, but I do not ever forget them and too many of them will add up to a very negative attitude on my part.  I need you to understand this and to try to accept it.  How hard should you try?  At least half as hard as I try to be reasonable and normal. 
  6. Understanding that I derive a strong sense of self from feeling independent and competent in my daily tasks and thus conditions, symptoms, or treatments which lessen my independence and competency present significant challenges for me emotionally, both interpersonally and internally. My most frequent response in those situations is extreme frustration, a fear of being perceived as a burden, and consequent apparent fixation on finding causes in order to develop strategies for practical immediate solutions if not outright remedies. 
  7. I expect that if, after ruling out medical explanations, my primary feels my physical complaints are of a psychological nature then s/he will be receptive to working with a psychologist of my choosing on the matter and will not engage in independent psychological assessment and diagnosis unless the primary has the background and training with abuse survivors to warrant such action.

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.