trust

My therapist asked me how I felt about having a diagnosis.  The diagnosis being Ehlers-Danlos Type III, a clinical diagnosis made by a genetic medicine specialist.  Blood work for EDS IV is pending.

Although the list of symptoms/presentation reads like a list of shit that’s wrong with me, I find that I distrust the diagnosis.  Some of this is because I know it will be questioned by many, many doctors, as all clinical diagnoses are.  “Well, how do you KNOW you had Lyme Disease?  I see your blood work here and it didn’t meet the criteria…”  For that one, I don’t bother arguing with them about how they seem to be thinking of surveillance criteria, which the CDC states are specifically “not intended to be used in clinical diagnosis” (or sole basis for diagnosis).  I just show them the EM rash picture and they say “Oh” and shut the hell up.  EDS Type III does not have a reliable test.  It’s “picture” is a mosaic of mostly “subjective” symptoms.  I.e., it is readily invalidated by any doctor choosing to do so.  And they do choose to do so with great frequency.  I consider much of that to be the result of a misapplication of the scientific method by people who are either inherently intellectually lazy or whose intellectual curiosity and excursions have been effectively beaten out of them by years of social reward for unquestioning conformity to authority and punishment for independent thinking (too often seen as feckless, unreimbursable meandering in the context of our education and health care systems).  Oh also there is sort of a tendency towards pissing matches among competitive people and my own experience working with, living with, and married to health care providers suggests that competitive types are over-represented in medicine.  It’s hard to make it through pre-med, med school, and residency if you do not have a strong competitive streak.

So all that said, while it is nice to have a name for that illness…the next time I have to fill out health care accommodation forms, for example, I will have a succinct and rather all encompassing diagnosis…I find I am less than enthusiastic about disclosing this diagnosis to other health care providers.  Like my GYN surgeon, for example.

I mention him because I am about to be cut up.  Well, rather cut into.  Now, I believe that more imaging would have been a good idea.  Perhaps a urology or general surgery consult.  But my providers are of the mind that if it’s not something that the morons who read my CT in the ER saw, then it’s not imageable (really I just can’t trust radiologists who read the CT of a woman who’s had a hysterectomy and bilateral salpingectomy as “the uterus and both adnexal regions are normal…”) and that if GI doesn’t want it, then I should follow up with the GYN surgeons.  And the GYN surgeons, being surgeons, are just like “hey, well it might be adhesions.  We can cut into you and look.”  Because an exploratory lap is not a big deal for them.  It’s like a walk in the park.

Initially, they offered next week and the very end of May.  I took the very end of May because at the time of the consult appointment, I was not in pain and had not had it in a few days.  I tend to have a ridiculously optimistic outlook on this shit, despite all my apparent cynicism.  No pain for four days?  Well then clearly it has resolved!  Stupid me, it came back on Wednesday night.  A little gnawing pain, oh maybe it will go away.  I’ll take half a pain pill.  Then a few hours later another half because it’s back.  Then the next morning, I wake up pain free and think “woo hoo!” only to shower for work, go to empty my bladder and have lancing LRQ pain that felt like I had been run through with a serrated knife.  Ok.  So take half a pain pill.  Nope, pain still there.  Take the other half.  Pain still there and escalating.  Call in to work, take another pain pill, squash myself up on the couch in a cushion cocoon, cry a little bit, talk to my husband who is concerned and stressed about moving, surgery, timing, etc.  And then call GYN surg back, still crying and say “Um, I’m really sorry to have to ask but do you think you can still do next week?  If I wait until the end of May, I’m going to end up using all my leave time from this pain.”

And so pre-op appointment today, surgery Monday, EDS-III possibly making recovery longer than the one the surgeon is going to recommend (they seem to assume all women will be back running marathons and horseback riding in one week after a lap).  I have more forms to fill out, little time to do it, and a surgeon to convince of the need for at least three weeks recovery.

While I have the optimism I spoke of earlier, paradoxically, I have a tendency to distrust that people will do the “right” thing when it comes to making my life more or less crappy.  I need to get over that.  Ultimately it’s about not wanting to have to push when I feel like the wrong thing is being done, or the right thing is not being done.  It’s about not wanting to be seen as pushy because pushy people are a pain in the ass and pain in the ass people are bad patients who invite invalidation, disregard, and maltreatment.  But not pushing gets you left in the dirt too.  So as always, I struggle to find a balance.

Advertisements

badges?

What a week.  Actually, 1 and 1/2 weeks.  It’s been tough.  Abusive coworker, meeting with HR to present my complaint against abusive coworker, meeting/interrogation with HR on accommodations, doctors appointments (what had been just the one turned into, jeez, three), presentation at work (I kicked ass but not before abusive coworker came in and threw a nasty little barb at me for going to HR about her behavior).

Yesterday was doctor’s appointment #3 and the last hurdle of my 1.5 weeks of extra crap.  The endocrine appointment, following up on the carcinoid work up.  Last time I was there, my husband was with me.  We didn’t plan it but we ended up doing “bad cop, other cop” with the attending and the fellow.  This time, my husband drove me in but had to go to work after.  I was pretty anxious about this appointment.  My husband said that AM “I think we should have specialist merit badges…” “Oh you mean like in girl scouts and I can wear them all on a sash?” I asked.  “Exactly!”  In fact, I love this idea for totally perverse reasons (which constitute the manner in which it was meant I’m sure).  I’d extend it to include badges for the various diseases and conditions that have been considered or applied to me in the course of the last nearly ten years of apparently inexplicable poor health).  We discussed whether endocrine’s badge should be thyroid, adrenal, or pancreas shaped.  Given how many endocrinologists these days are basically just diabetes docs, we decided pancreas.

So it was without my funny, strong husband that I faced this endocrine appointment.  A bummer.  I waited the usual half hour to 40 minutes past when my appointment was to start and then the fellow came out to get me.  In the exam room, she starts with talking about my last appointment, recapping what they had been looking for since then – i.e. the reasons for the tests.  She mentions my husband, and I swear she actually scanned the room like a cat looking for a dog its sure is in there and said “Your husband’s not here today?”  I laughed.  I laughed more telling my husband.  “You made quite an impression I think.”  He says we collectively did and promises to come to my next appointment with them. Because there will be a next one.  My 5-H1AA and somatostatin levels were normal.  “Are you still symptomatic?” the fellow asked.  I was good at controlling my response – because the natural one would be “well DUH!  I’ve had them for 8 years now.  What the hell do you think?!”  I said yes, and that I seemed to be a flare up of the GI symptoms.  She asked me how often I had a “movement”.  “5 today between waking up at 6:30 and leaving the house at 8:30”.

Now, I know I’ve told them and other doctors that I have diarrhea, that it is chronic as in daily, and that within that chronic pattern there is room for fluctuation in that some times I am going to much I can’t eat without triggering a hasty trip to the restroom.  I guess they just forget this.  She seemed surprised.  She gets the attending, they consult, we discuss.  “What about breakfast?” the attending asks me when we are discussing my GI symptoms.  “Oh I stopped eating breakfast a long time ago.  I’d never get out of the house.  Usually I can eat by about 11 or 12, but right now I’m just avoiding meals until I get home from work.”  We talk about the flushing and heat intolerance, when it happens.  They discuss whether to “present” me at a conference, then the attending asks  “co you ever get rashes or itching?”

Do I?  When medical history/intake forms have “itching” as an option, I always check it.  I have reliably written under “allergies” on  medical history forms the following: “NKDA; skin/dermatitis with aloe, some detergents, some metals, some elastic materials, and other unknown substances”.  The list is long and I have never had allergy testing.  Why bother?  Why have someone actually MAKE me blister?  No thanks.  I passed.  I always patch test and if a new product comes with even a little tingle of an itch, I stop using it immediately (lesson learned the hard way after Almay Hypoallergenic liquid eyeliner left me looking like I’d applied a thin line of acid to my eyelids – I spent the week with horrible zombie eyes).

And so another test, for mastocytosis.  This time when I’m “symptomatic” as in when I’m flushing.  It’s tough because that is more likely to happen spontaneously in the evening but I can induce it by overheating myself.  Yes, do that.  And get your blood drawn within the hour, I am told.  Oh they’re going to love  this at work.

I had run across mastocytosis before, in fact when I google “diarrhea” + “flushing” + “hypotension” this link to a New England Journal of Medicine blog post about mastocytosis is the second hit and starts off:

In this week’s Case Record of the Massachusetts General Hospital, A 37-year-old man was admitted to the hospital because of flushing and hypotension with near-syncope. Similar episodes had occurred with increasing frequency during the past 12 years. The symptoms were usually provoked by physical exertion, mental stress, or intense emotion, and lasted up to 12 hours.  

Sounds familiar, doesn’t it?  I didn’t follow up on mastocytosis because at the time I had run across it, my CBCs had been pretty normal (with the exception of the apparently inappropriately large red blood cells, which I assumed is from PPIs/vitamin deficiencies).  However, they are not as normal now.  For the last year, my RBC count has been dropping and is now reliably low every time I have a CBC (and keep in mind that I am chronically dehydrated from the diarrhea, so if the RBC was falsely anything on those draws, it was falsely high).  Most recently, my hematocrit has dipped down out of the reference range.  I do not have a uterus anymore so we can’t just say “oh she probably has her period and so she’s a little anemic from that”.  Nope.  I had been planning to ask my primary about the dropping RBC when I finally schedule a “where are we going, where have we been” appointment.

So another day, another appointment, another jug of pee.  And possibly another “badge” since mastocytosis is properly under hematology.  I need to figure out what I’d put on the badge for that one.  Drop of blood?

monkeying around

Had an ultrasound yesterday.  This was the recommendation of my surgeon after I was in two weeks ago with persistent right lower quadrant (and when I say lower, I mean LOWer) pain post-op (hysterectomy).  Let’s take a moment for some history here.

This pain did not start two weeks ago.  It started immediately postoperatively.  It was the worst area of pain in the hours, days, and weeks after surgery.  It brought me back to their office three days out, and I mentioned it at every visit since.  Finally, after having an episode at work that brought me down on my knees gasping in pain, I made an appointment to specifically address this continuing pain.  The pain comes and goes in severity but it’s always there.  I just usually tune it out if it’s low level.  I can’t tune it out when I (a) go over a speed bump or hit a pot hole (b) randomly just get bad pain (c) have sex.

And another thing.  When I lay in bed at night on my left side, I feel like I need to pee.  It’s sort of a pulsating wave of pressure just under my bladder.  Laying on my right side (yes, that’s the bad side) relieves it.

So I tell them all this.  Doctor says it could be adhesions.  No, he doesn’t use that word because he doesn’t think I know that word.  He says “build up of scar tissue”.  I remind him that the pain has been there since surgery.  Scar tissue be damned, man.  As I understood it, adhesions take a bit of time…oh say more than one week to build up and start causing problems.

So I get an ultrasound scheduled two weeks later because that is all that fits in with my schedule (how about the middle of the day and 20 congested miles from your workplace?  No?  That doesn’t work for you?  Ok, 4:15 nearby in two weeks).  I go at 4, I wait until 5:00 to get in.  I feel like shit and the whole radiology area is overheated so I feel like extra shit by the time they take me in.  And then we do an external ultrasound.  Then internal, with probe driven by the radiology equivalent of a race car driver.  Jam!  Blam!  Pow!  “I’m being a little aggressive,” the radiologist explains to me as he wrenches the probe around in me “because I really want to see that ovary.”  And it turns out that the pain is very much ON my right ovary.  The one they “shaved” a “bleb” off of during surgery.  He says he doesn’t see anything that would explain the pain, but that it really is localized on the ovary.   Yes, I tell him through gritted teeth.  I wonder if my fingers gripping the stainless steel exam table hard enough that I feel I should look for dent marks after he probed “aggressively” to the right might have been a sign.  “I think it’s too early for adhesions” he said.  “I suppose they might have just been monkeying around in there with that ovary,” he concludes.

Here’s my theory.  Given the hot flashes I had after surgery and the pulsating nature of some of the possibly associated symptoms, I think indeed they were “monkeying around” and I think they did some damage to the vascular supply, possibly to the whole effing ligament, of my ovary.  Just  a theory.  My guess is you’d have to do a fancier ultrasound to see that though.

Given that there was nothing identifiable on the ultrasound, I’m just waiting to be called by the surgeon’s office to tell me the great news that there is nothing wrong.

Sweating it out, part two

When I mentioned the night sweat thing at my appointment yesterday, the surgeon mentioned possible changes in the blood supply to ovaries after hysterectomy.  So like a mini-menopause? I asked – a minipause!  Although he is adorable, and although I’ve seen things approaching emotions on his face, I have to say that I’ve met few people who do stone-faced as well as my Nordic GYN surgeon.  Apparently “mini-pause” warrants stone faced.  And “it should pass.”  I knew if I pressed for scale of “passing”, I’d get evasion.  I don’t know, maybe it was something about him or just experiences with doctors in general.  Anyhow, I went home and looked it up after yet another sweaty (but not in the fun way) night.  An unscheduled hormone hop would also explain the HUGE migraine.  Hell, my body doesn’t even like the regularly scheduled ones, so you can imagine how it would feel about “minipause” ones.

http://www.ncbi.nlm.nih.gov/pubmed/15629673

    Ovarian changes after abdominal hysterectomy for benign conditions.
    Chan CC, Ng EH, Ho PC.
    Department of Obstetrics and Gynaecology, The University of Hong Kong, Queen Mary Hospital, Hong Kong, People’s Republic of China.AbstractOBJECTIVES: To investigate any change in the ovaries, including early follicular serum follicle-stimulating hormone (FSH) level, total ovarian volume, total antral follicle count, and ovarian stromal blood flow, in patients who had undergone abdominal hysterectomy for benign conditions. 

    METHODS: Fifteen women with abdominal hysterectomy and conservation of ovaries for benign conditions and who were between 29 and 44 years old were recruited to undergo three-dimensional ultrasound examination with power Doppler to assess total ovarian volume, total antral follicle count, and vascularization index (VI), flow index (FI), and vascularization flow index (VFI) of ovarian stromal blood flow. Serum FSH, estradiol, and progesterone levels were checked on the same day. The results of the assessments were considered taken during the early follicular phase if the estradiol and progesterone levels were basal. Fifteen age-matched healthy women underwent the same assessments on the second day of menstruation.

    RESULTS: Women with hysterectomy had significantly elevated serum FSH level and lower ovarian stromal blood flow indices, including VI, FI, and VFI, as compared with healthy women. The total antral follicle count and the total ovarian volume were similar between the two groups.

    CONCLUSION: These changes may suggest altered ovarian function after hysterectomy.

     

certified, with restrictions

When you go out on medical leave, you need to obtain a doctor’s certification that you are fit for duty to return.  In my employer’s case, there is a section where the doctor can mark “released to work with restrictions” and the restrictions are then given below.  My doc was very nice about this part.  “Sure, just have ________ fill it out,” he said and was gone.  Ok, so ________ filled it out and I told HR, who has asked that I send in my “doctor’s note”.  Boy, I hope that they aren’t expecting more than this document or I’m gonna be kind of pissed.

The restrictions are:

  • 1/2 time for 2 weeks
  • No lifting or straining
  • Parking on same level as office
  • The first is on account of the fatigue and continuing pain. The second is standard. The third has to do with how the entrance to my building is set up. The “first floor” is actually NOT on the ground relative to the parking lot. It’s up a pretty significant flight of concrete steps outside the building. Then into the building. Then down a hall. Then up another very steep, poorly lit, low contrast set of steps. Through the lobby, then up a short flight of stairs. And then down a hall, down another hall, then my office. There is parking on the upper level, just outside my office. But it requires a handicapped parking permit and a separate key to get in. And my boss has, in the past, railed about employees accessing in this way. To the point where she’s blocked their getting a key. Between that and the 1/2 time, she’s probably not going to like this very much. Well, I’m going to try not to care how much she likes it and concern myself with compliance. One of my biggest concerns with that is that I suspect she will expect me to do 40 hours worth of work in 20 hours a week.

    sweating it out

    I’ve been having miserable night sweats all week!  Gah – so not only does my sleep get disrupted, but I wake up shivering and drenched.  I’ve had bouts of this before, back when I had Lyme Disease and on and off some since then (when I was on hormones for the endo).  But what the hell?  Not infected, no temps (well, no greater than my usual slightly elevated temps).  I’m not even having a lot of overheating during the day since I’m at home and can control my immediate environment right now much better than I usually can at work.  It’s a pain in the ass!

    hippy chick

    Now that I’m barely taking any pain meds (yes, that’s right, two weeks post op and the surgical pain is warranting no more than 500 mg tylenol/acetaminophen and 200 mg ibuprofen a day) I am noticing that my hips took a beating in the surgery.  Maybe it’s time to up that pain med dose again?  But I risk “rebound” headaches, even though what I’m taking the meds for isn’t a headache in the first place.  Since I’m not doing much, i.e. not climbing the many stairs necessary to get from my parking space to my office, I’ll skip the headache and just ice the hips.  But in about a week and a half, that’s going to change.

    I’m planning to ask the surgeon at my follow up to write for a parking accommodation for when I go back to work.  And here’s hoping he’ll comply.  I worry it’ll be turfed to my primary care, since the hips are a pre-surgical issue.  My reasoning is that the issue was aggravated by surgery so it makes sense for the surgeon to address it.  Fingers crossed!

    a couple of tips

    If you’re having gynecological surgery – granted I’ve only had laparascopic surgery so I can’t say that this will generalize to laparotomy surgery – here are a few things I’ve learned.  I’ve had three, one in 2002 which definitively diagnosed the long suspected endometriosis, one in 2007 which added a diagnosis of adenomyosis, and one just a few weeks ago which removed my uterus, cervix, fallopian tubes, shaved a bit off an ovary, removed multiple endo lesions including resecting the left uterosacral ligament (which apparently was affected by the endometriosis).

    1.  Find an experienced surgeon.  Do not assume that just because your GYN doc says that s/he can do this surgery, s/he is the best person to do it.  S/he is not necessarily.  The GYN who did my first surgery left several sites in place because she was not skilled enough to remove them.  My next surgery was with a doctor who had made his name as a fertility specialist/surgeon.  Much better results in surgery and much better at diagnosing and treating endo than the generic GYN.  (addition):  I’ve had some luck by cross referencing google scholar searches (in this case, for recent articles on endo and laparoscopic surgery) for authors with my home state’s affiliation.  Yes, lots of false hits but it’s a decent way to get a sense of what doctor or group of doctors close to you are working on what you’ve got.  I also have had good luck asking around. This works best if you are asking people who have what you have.  My New England Outback doc was a double hit – recommended by a friend with endo and who also happened to be someone I had found via the internet search I described above.

    2.  Even if the doc says you don’t need to do it, do a bowel prep before surgery.  I didn’t before surgery 1, nor did I get stool softeners.   Oh my god did  I regret this.  This most recent surgery, I decided I didn’t have time to do a prep and since my intestine has a pretty quick transit time these days, I figured I wouldn’t need it.  I was wrong.  General anesthesia, people fiddling around with your intestine, and narcotic pain meds will slow your bowel down to a standstill.  Do a mini-prep.  You can ask your doctor or (probably better) the nurse at your doc’s office for a recommendation.  This is not the huge colonoscopy prep!  You don’t want that, no one wants that.  This is just something to make sure you’re not holding a full bowel going into surgery.  And take the colace/stool softener afterwards and if they don’t offer it, ask for it.  Straining to go after abdominal surgery is a horrible thing that can be avoided or at least lessened if you prep and if you take the stool softeners.

    3.  They will tell you, or they may tell you, that you can use a heating pad for comfort post op.  I and a friend who also recently had a hysterectomy both found that ice was better, at least initially.  Not long periods, and not everywhere.  But for that one super sore spot (for me, just under the incision at my navel), ice was my friend.  Heat was good later, after a few days.  When I strained myself though, I still found ice was good.

    4.  Don’t strain yourself.  Stupid little things like reaching down to pick up something off the floor or turning to get something off the end table while I was sitting on the couch did me in.  You do not have the flexibility you are used to.  Memorize that and turn your full body, not just your top half, when reaching for something.  Don’t bend or lean down or you may regret it.  And definitely do not plunge the toilet.  No, that’s a big fat no-no (it probably goes without saying but since I was stupid and prideful enough to have done it rather than ask my husband for help, I figured I’d mention it).

    5.  Plan rest breaks.  Even if you think your activity level is still low, for that first week to two post op, plan to just stop and lay down for a while every couple of hours.  If you don’t, your body will force you to later.

    6.  Drink a lot of fluids.

    7.  Medicate and write down your doses and times in a notebook so you will know when it’s time to medicate again.  For the first week or so, I found it was crucial to stay ahead of the pain.  You can play stoic later and try to wean yourself down by extending your time between doses or cutting the dose down, but for the first week or so, please just take the meds.

    8.  Set boundaries on visitors and well wishers.  People may want to help out, and that’s great.  If you’re lucky enough to have close friends and family who want to show their support and love, tell them that they can bring over food, go grocery shopping for you, bring you reusable hot/cold packs, get you a gift certificate to Audible.com or Amazon, pay for a month of netflix (watch instant rules!), be available to take you to the doctor if you need it, ferry books and videos to and from the local public library for you, or let you borrow their iPad/iPod or other very portable electronic device.  They are not to come over for prolonged visits though.  Hosting, even hosting from the couch, takes energy and that’s energy you need for you.

    Relatedly…

    8b.  The couch is YOURS.  No one else’s.  You do not need to share.  For your mental health sake, you need to NOT be confined to bed, which means you need to have access to the couch (or a recliner) and the bed so you can get a change of scenery in those first few very low activity days.

    9. Do not be shy about calling your doctor.  If you feel funny, if you feel better then much worse, if you have a question, call.

    10.  When you’re ready to shower, I do not recommend trying to wash your hair at least for the first few days post-op.  If you have bars or a shower chair, you might try it with some degree of safety.  The reason for this caution is that when you close your eyes and tip your head back, you may suddenly discover just how unsteady you are.  The environment of a soapy, slippery shower stall or tub is not a good place to discover this.

    purulent

    An unlikely favorite word, made so for the personal history with it.  And currently, I am.  Or more precisely, one of my incisions is.  There’s always one.  So off I go back to the surgeon (the fellow to be precise) at B.A.T.H. to have it “cleaned up” and probably to start an oral antibiotic.  Oh my poor intestine.

    Dear old m.o.m

    Narcotics and milk of mag was the recommendation. I wonder how many prescription drug addictions insurance companies feature in. Reasoning that they won’t cover the non-narcotic pain med but will happily let me get more percocet – that’s some bad medicine I say.
    Could they be liable? Are you even allowed to sue an insurance company these days?

    So, one week post op and doing good. One very interesting thing…I’ve actually had menstrual cramps that hurt as bad as the pain I was feeling one day after surgery. That’s one day after having my uterus and cervix removed, part of an ovary taken out, a ligament resected (cut up to get a particularly nasty endo implant out then reattached), and various other endo sites dug out of me. I wish I’d had a hysterectomy years ago. I really do. That’s a lot of years of horrible pain.

    It’s snowing like crazy here. Still more to come. My husband’s safe at home with me though, having gotten two weeks off work on FMLA granted leave. Interesting, and quite irksome, thing about his leave – if he were taking this time off for me to have a baby, he’d have been able to go on short term disability time instead of it coming out of his sick/vacation pay. Outstanding, isn’t it?