control and the rest of it

Had my brother and sister over for thanksgiving.  I had entertained notions, well, fantasies really, of skipping town.  Maybe going to see a good friend in NJ whose door is always open for me, spending thanksgiving with her family.  But into that fantasy intruded the thought of  my brother and sister not having anywhere to go for the day and so I didn’t.  So my husband and I cleaned and cooked and planned and had them over.  We were tired and the still present sense of the absence of the cat is sucking at both of us.  I had a call my brother two days before Thanksgiving (actually, on the way home from the surgeon’s office) in which he told me that he and my sister had had a fight the night the cat died.  It had been, presumably, about him advising her to leave me alone and not pester me while the grief over the cat was still fresh (worst idea ever, btw).  In this call, he expressed the usual brother/sister fighting that they get into.  But this time there was a twist.  This time, it was also about our parents.  And why my sister and I won’t accept them in our lives.  He was crying at times, “mom and dad are good people who made some bad decisions” he told me.

    Now, I don’t want to burden this bit of back story with too much of an embedded back story on that but it warrants the (greatly) abridged version:  my parents are not good people and the bad decisions they made included knocking my sister unconscious several times, locking my brother in various small places (think laundry hamper, but rigid structure), kicking both of them in the stomachs when they were less than 6, dragging them around by the hair, and letting a child molester live in our house…and continuing to let him live there even after they were told that he had molested us habitually.  As an adult, I tried to have a different relationship with them.  One with boundaries, which included “let’s not talk about HIM” (the pedophile, who my mother still loved to bring up out of the blue, and what a great guy he was as if none of what had happened had actually happened).  My mother and I fought horribly well into my adulthood and my decision to remove her from my life was difficult and came after a lot of soul searching, attempts to change things, and much therapy.  My father, I stopped talking to after my sister reported that he had started kicking the family dogs on the stairwell in the house they shared.  He came down to her apartment the day she told me this, he was infuriated because someone had called HIS number looking for her.  His affect and tone was exactly as it had been when we were little and he would hit her.  I charged up the stairs after him and told him that he did NOT get to act like this anymore, that his history of violence and recent violent behavior made it completely not ok for him to menace my sister like that, and that if I heard about him doing it ever again, I’d sneak in and kill him in his sleep.  I do not speak to either parent now because they’ve demonstrated that they cannot stop the rotten behavior they engaged in when we were little, and as an adult survivor of and witness to that abuse, it makes me beyond outraged.

I said none of this to my brother.  I did say that we had a difference of opinion.  I said that I wanted to have him in my life and was happy for it.  We talked again by phone the day before thanksgiving, his mood somewhat improved.  I was in between work and the doctor’s office (oral thrush infection, yay antibiotics).  I spent way too much time on the phone with him and ended up having to race to the doctor’s office in day before thanksgiving traffic just to wait two hours to be seen.  I was tired that night but took it easy and it worked out.  We did Thanksgiving, we got through ok, I wasn’t feeling too bad, and it seemed like everyone had a decent time.

My brother and sister stayed over night after Thanksgiving dinner.  The next day, Friday, my brother and my husband and I talked a little about our plans for my brother’s birthday, which was Saturday but which we were going to celebrate the week after partly to honor by brother’s request that we “separate Thanksgiving” from his birthday this year.

The next day was Saturday, his birthday.  I forgot to call him.  I woke up late, I felt energetic and did some grocery shopping, thought about calling my brother but thought I’d do it later, cleaned a little, had sex with my husband (hey this is cause for celebration when you have a chronic fatiguing and joint-pain inducing illness – plus I’m about one month away from an at least 6 week post-op ban on sex).  And then I got a migraine.  And then I made the mistake of using that as an excuse.

What follows is a text exchange between my brother and me from Sunday.  He hasn’t called or replied in any way.

(Dyspatient) Nov 28, 9:05 AM:  Hey..sorry I missed calling u on your actual bday. Was gonna do it in PAM then went 2bed w/a migraine. I know we’ll b celebrating next weekend but happy birthday!

(Brother) Nov 28, 7:51 PM just would have been nice if someone – anyone! – could’ve taken a moment and wished me a happy birthday on my birthday.

(D)  Nov 28, 7:52 PM: I’m sorry!!! I was going 2 call – I can’t really control when I’m going 2 get a migraine.

(B)  Nov 28, 8:19 PM: i mange to text u on ur birthday, despite having several chronic illnesses, Dyspatient.

(D)  Nov 28, 8:20 PM: Ok.  Thanks.

[I try calling B – it goes straight to voicemail.  Phone is off?]

(D)  Nov 28, 8:35 PM:  straight to voicemail. So did u just want 2 start a fight, make me feel like shit, or did u actually want 2 talk? Probably pointless 2 write u since yr phone’s off, but I figured I’d try anyhow. I’ll b up 4 a little bit if u change yr mind.

[I decide to go to bed because as inclined as I am to stay up and mope about this, I need to work.  I need sleep.  I can’t indulge the childish desire to sulk about being sick because I am sick]

(D) Nov 28, 9:38 PM:  I love you very much, I truly do but I wish you wouldn’t say mean things. I don’t like this trend of “sicker than thou” that’s arisen.  It’s not cool.  I have never gone out of my way 2 make u feel worse about feeling sick.  Not once.  If u want to feel this pissed off about not getting a call on yr bday from me under some pretty significant circumstances, it’s yr choice. But please realize that it makes no sense 2 me 4 u 2 be so cruelly invalidating& 2 act like I’m in the habit of letting u down or discounting u.  if I’m able but fail 2 drop everything&drive 2+hours to b with u if u r in the hospital again & claim  twisted ankle as an excuse, then u’ve got a right 2 freak out, but not now&not over this. I love u, I have & will continue 2 reach out 2u but I will not allow u 2 be casually mean&invalidating about my health problems. It’s damaging&u need to stop doing it. the cumulative effect of the health shit has been devastating.  Please don’t make it worse.

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adenomyosis

“That’s just a word for ‘fibroids’,” my neurologist said at my first appointment with him summer.  He had been reviewing my medical history.

    A bit of an excursionary side note here:  I always feel vaguely guilty when I list my medical conditions and/or recurring symptoms – like I have no valid right to claim to have them, like I am heaping it on, like I am writing out the invitations to a pity party.  Or at least, that I will be seen this way.  Why ever would a patient experience those feelings, one might ask.  I can tell you, they didn’t arise on their own.  These are iatrogenic, at least in large part.
    I used to try to keep it to only things I had a diagnosis for, a name for.  “Endometriosis, GERD, Migraines, IBS-D”  That’s a short list.  Again, because of the response of doctors.  “Who told you have …..” was a response I heard one too many times.  Interestingly, I’ve heard it for two things with confirmation – endometriosis and Lyme Disease.  “Who told you you had Lyme?!” one doctor said in an abrupt tone.  And this is when I thank my lucky stars I had the forethought to take a picture of my lyme rash.  The endo was questioned until I could firmly reply “It was confirmed by laparscopic surgery”.  But until I could say that, it was considered by some doctors a questionable diagnosis.
    So I know from those two test cases that there is a good chance I will be questioned, sometimes rather ham-handedly, about what I put down on that form.

The neurologist was not the first to question “adenomyosis”, a diagnosis I was given in 2007 after my last lap for

illustration of uterus with multiple fibroid tumors

Fibroids, from http://www.nlm.nih.gov

endometriosis.  The first one was a GYN I tried out briefly.  “That diagnosis can only be made after hysterectomy” I was told by the stressfully thin looking impatient young doctor.  I told her that I was just reporting what my last GYN had said, that he had been the one doing the surgery, and that he had made the diagnosis based on imaging and his observations during the lap.  At this, she bristled with contradiction, as if I had personally insulted her.  Really, I greatly dislike this sort of doctor, well to boil it down -I dislike this sort of person but especially so when they are in a person-caring profession.  No one is as smart as me! seems to be their motto.  Needless to say, she did not remain my GYN long.  Moreover, her estimate for recovery time post-hysterectomy was an unqualified “2 weeks”.  No “every patient is different” or “it depends somewhat on what we’ll find and need to do when we’re in there”.  And this, ladies, is why I vowed never to go to another general purpose OB/GYN again.  Any OB/GYNs out there reading this who don’t suck, I apologize for painting you all with a broad, drippy brush but time and again in your offices, I’ve run into various versions of this soul scouring combo of ignorance, arrogance, and dismissiveness.  I’ve had it with the bad apples in your bunch who should just stick to pap smears, breast exams, handing out birth control, and perinatal whatnot.  I’ve had it with being a pinata for someone who decides to engage in a farce of diagnostic gynecology despite having a clear lack of preparation for that sort of thing.  It may come down to a flaw in the general OB/GYN training or it might have to do with a selection bias – too many of a certain kind of person who chooses to go into OB/GYN (babysniffers?).  Whatever the reason, the field is rife with men and women who do more harm than good with it comes to dealing with gynecological pathology in a general practice rather than referring the patient out to someone with more experience.

Illustration of a uterus with intramural endometrial infiltration, adenomyosis

Adenomyosis, from http://www.med.nyu.edu

Back to the neurologist’s comment.  It turns out that no, adenomyosis is NOT just another word for fibroids. They are distinct entities, with some significant implications if one if mistaken for the other.

And as for what I put on my medical history forms now – I still go back and forth.  If I’m feeling like this doctor needs to know everything, I list by name what has been confirmed with objective tests or impressions (and yes, that includes adenomyosis and migraine) and for the others, I write descriptive symptoms, e.g. “chronic joint pain” “chronic fatigue” “nausea”.  And mostly, these days I just try to avoid situations where I would feel uncomfortable doing anything else.

update

The vet called yesterday to tell me that the post-mortem cytology was consistent with lymphoma.  I asked about FeLV and that has her off researching his record to see if he was tested for it.  I stopped having him vaccinated years ago when he had a horrible reaction to it.  Horrible as in it nearly killed him.  He was an indoor only single cat household kitty, and although I didn’t love the idea of him being unvaccinated, I didn’t want to risk another one of those reactions.

Holiday meant having the sibs over.  My brother has some strong opinions about what kind of pet my husband and I should get, later.  I say “later” because we are very much not ready for another pet right now.  We’re still very deeply mourning the loss of the cat.  But we may foster in February.  We’ll see.

 

B.A.T.H. time

It’s take your wife to work day…well for me anyhow.  or more properly for my husband.  I’m hanging out in his office, which is in a satellite campus of one B.A.T.H. after my pre-op “meet and greet” with surgeon number two at one of the other B.A.T.H.s ended early.  I could have tried to get into work, but my boss would probably find a way to screw me out of being paid for coming in.  I.e. I took the whole day based on my last appointment at this office (which took a loooooong time) and if I had come in early, there is nothing my boss has done to indicate that I would get that sick time credited back to me.  In fact, there are many things she’s done to indicate that I would NOT get it back.  Plus, I’d have been going in in jeans.  Oh dress code violation.  Very important.  And lastly, it’s not busy at work right now.  Ok, not lastly.  Lastly is that my boss has been harassing me for the last day and a half about my not being in 3 minutes after my start time (I’m scheduled for half past the hour, she sent the email at :33).  I punched in at :35, which means I was in the building even while she was off sending the email looking for me.  We’ve been having an email discussion, which I believe is about whether her commenting on is a reprimand or warning and which she thinks…well I don’t know what she thinks.  Not much and not well, I suspect.

Given all that, given that I am only allowed to take sick days in half or whole day chunks, and that speeding from surgery appointment to work I would have gotten in for 2.5 hours and not 4, I did not go in.  My husband on the other hand, offered to take me home or do something else, or I could come in with him to hit two work meetings where he would have been missed if he’d stayed out too.  I chose to come with him.

So I got to meet the gang.  And make some phone calls.  No, the vet does not know what made my cat so horribly sick so quickly.  Yes, my primary did send the referral for today’s surgical appointment.

Today’s surgical appointment. I have time so I may as well write it now.  Hubby’s probably going to be a few more minutes.

Total hysterectomy kids.  Ok, maybe not total.  I can’t keep total and radical straight.  Cervix plus uterus.  Leaving ovaries or an ovary if they aren’t a mess “which I doubt” the surgeon added.  Actually, despite a comment like that out of context, his manner was much more pleasant and open than what I expect of surgeons.  The doubtfulness came more as an affirmation of what I already know from pain, surgeries, and imaging.  It was kind of nice to have a doctor who wasn’t all “hey you never know…it could be all good when we go in.  I could find a prize or a pot of gold!”  I hate that crappy optimism.  I like realistic optimism, but I have a very low threshold for being bullshat and pushed to that false chipper hey it’s all great when me and my body know IT IS NOT.

I will be admitted at least for one night.  “With endo, we usually have more extensive work to do than with a hysterectomy for other reasons,” he said and paused.  I asked “and so the admit is for pain control?”  he nodded.  Ok again, I respect that.

I am a little torn on the cervix.  He said there were three recent studies showing that removing the cervix reduces the need for repeat surgery and that one they just concluded (a nine year diary study) showed no increased incident of sexual, urinary, or bowel dysfunction or of vaginal prolapse.  Ugh.  Jeeesus I hope not, all that sounds pretty horrible.  But right now, I am having considerable sexual consequences of the endo, and who knows if the bowel is related.  So.  I’m going to talk to a friend of mine who did this surgery.  I think she had them leave her cervix and has regretted it.

I also talked to the surgeon about the joint pain and asked if there is a way that they can use something to help reduce the strain on the joints during surgery.  I had read about soft collars for the neck and using sandbags.  He made a note and said “certainly…but please do remind us pre-operatively.”

And last, I got my FML form filled out.  We went with three and a half weeks off, with the understanding that if I need more or less, it can be amended.  Once I have that submitted, I will tell my boss.  I tried to do it the other way around last summer and ended up in a bad situation.  Not going there again.

slow motion

The last few days have been happening in slow motion.  Not dramatic slow-mo, slow like a battery that’s nearing its end or a watch with a slipping gear.  There will be isolated episodes of activity, of what seems like normal, or possibly even a little over-fast and manic.  Then back to the crawl.

It makes it hard to do things.  One of those things is put together papers for my appointment with the surgeon today.  What papers?  Med list, FMLA crap, and questions/concerns.  I managed to do the first two – more or less – last night.  Questions/concerns.  That is a problem.  The document was open on my computer for well over 2 hours last night but all I got was “November 22, 2010” and the date and address for the appointment today.  It’s not difficult to see where the reticence comes from.  This is the history part.  This is where I think I need to find the special words to say to convey to the doctor what is wrong with me (globally or at least more globally than just the endometriosis and adenomyosis, the reasons for the surgery).  I say I think because although I’ve tried that for years and years with doctors, been motivated by the belief that it is my job to prepare and provide information in a way that is understandable and which will be least likely to trigger comprehension impeding psycho-social cues for them (i.e. “crazy lady patient with hysteria” or the more sophisticated but still unenlightened “woman whose gender identity won’t allow her to seek power and control in other spheres of her life and who thus subjects her own body, which she of course feels deep, feminine shame about, to a sort of cruel tyranny of over vigilance and care”).

I’ve taken on that job, that probably impossible job of leading the communication (without appearing to lead of course, that also is bad.  That = “pushy uppity strident bitch”) through the mess of perceptions and perceived perceptions and so on ad infinitum or at least ad-end of the cognitive system’s ability to process on so many self entailing, embedded levels at once.  And you know what?  I fucking hate that job.  I hate that it is mine to do and I hate that I have to do it.  I’ve tried abdicating.  It doesn’t work.  And so the only responsible thing to do is to continue, to try, to refine, to type up the questions in advance.

gone

My cat died Thursday night.  We don’t know exactly what was happening with him physically – on the last day, he went back to the vet for an ultrasound of some of the lumps and a needle biopsy, but he had gone so far down hill.  On Tuesday, two days before he died, his bloodwork had had some abnormalities, but nothing that suggested whatever processes were going on were so advanced.  While I am glad that he didn’t linger on for too long so sick, I am sad that it was so quick that we were unable to do much to relieve his suffering at the end.  He died while I was on my way to the vet, knowing that I would be putting him to sleep when I arrived.  My husband was there though, at the end, and held him while he was in respiratory failure and the techs tried to administer oxygen.  They gave Max a shot of valium to try to calm him, and as my husband was still holding him, he stopped breathing.  It’s been a very sad few days, with more to come I’m sure.  The vet said on Thursday afternoon that she suspected there was some infection going on – they had found evidence of pleural effusion, pancreatitis, and endocarditis that afternoon.  On Tuesday, he had only an elevated WBC count and was anemic.  I’m hoping that at least nothing we did worsened the situation.  The vet has sent off the lymph aspirate and the fluid they drew off his lungs near the end for analysis so we may have some idea next week what happened.  I do feel the need to know.  He was not a very healthy cat, he was old and had had some significant digestive symptoms for years.  I don’t feel shocked, I’ve been preparing for this every time he would go into a flare where he’d go off his food and lose weight.  But I wish the end had been less painful for him.

Orange and white tabby sitting in "cat tree" at a window while morning sunlight fills the room.

Max August 2010

what if?

Do you ever think about what you’d do if you just totally lost it?  I don’t mean if you had a tantrum or breakdown, I mean come unhinged.  Lost whatever it is that holds you to constraints of social contracts, of responsibility to yourself or to others to keep it together, to act as if there is a tomorrow and you’ll need to be equipped to face it.

I do.

I think, but I’m not sure, that I would not become violent.  On the side of practicalities, we have the simple fact that I’m just not that big and powerful.  I could (and do) fantasize about slapping someone who did something horrible to me, but the knowledge that I am simply too puny to do more than annoy is too strong to give this fantasy much traction.

I think I would get mouthier.  I would give away my things.  I would make a scene.  I would stand outside the mall at christmas time and tell people that they are beautiful and that they just need to love, really seriously love themselves and their friends and family.  I would tell my boss that she’s an imbecile, a dangerous imbecile who everyone mocks and no one respects.  I would bust into church to tell my parents that the god they have so recently rediscovered would condemn them to one of the lower, nastier rings of hell for all the pain they caused and for parading around in their current mockery of redemption and that they’d better start doing more than bible studies and voting republican.  I would try to build a house.  I wouldn’t get very far but I’d do it anyhow. I would sit outside in a field at sunset and pat a stray cat without fear that I was going to get bit by another tick.  I would try to rescue all the things and people I want to rescue or help but have to turn away from because the reality of it is too much, too big, too overwhelming and too undoable.

I’ve been thinking about this today because I’m trying to maintain despite being at a bit of a crisis point.  The cat is dying.  I have surgery in the offing and no diagnosis or plan in sight for all “the rest of it” that is wrong with me, a primary care who says “that’s gonna make it all worse” but life makes it all worse.  Every month, something makes it all worse.  It’s coming up on my least favorite time of year.  And honestly, I am just tired of hanging on, hanging in, getting up and doing and pushing through.  I want to do more than that.  I want my life back, I want my vitality.  I miss the belief that although bad things will happen, I will get through ok.

sad

The cat took a bit of a turn for the worse this week.  We had had him on antibiotics and an antihistamine to see if either took down the lumps.  While we think some of them receded a bit, his overall demeanor and behavior, including eating, drinking, and voiding, went downhill.  The vet agreed that the antihistamine might be making him groggy, so we dropped it down then stopped it.  He was still lethargic, unsteady, having problems drinking, and not eating much (although initially interested in food, he’d give up on it fast, like after 5 licks).

So he went back to the vet today.  Vet agrees some of the lumps have receded but says his white blood cell count is very elevated and he’s anemic.  With him being on an antibiotic for 4 days, the elevated white blood cell count is not a good sign.  She’s giving him a shot with a stronger antibiotic, fluid therapy, then I’m bringing him home overnight and back in the AM for an ultrasound and needle biopsy of some of the lumps.  The concern is that it’s lymphoma.  This wouldn’t be terribly surprising.  He’s old, he’s had significant gastro symptoms for a while now, and just generally is not the most healthy and spry  cat.  But I am still terribly sad.

I stayed home today.  Still feeling gross, now I think it’s mostly just the antibiotics I’m on that are beating up my gut.  And between this, the headache, and the cat, I figured I’d be a menace and a mess at work.  I’ve already caught numerous language mistakes in my emails.  I know if I were in, I’d be screwing up left and right and I’m not sure I can deal with the stress that is my office right now.  Not with everything.

I’d say wish us luck for tomorrow but honestly, I think there’s not much coming back from this one.  So wish the cat comfort and care, wish me and my husband peaceful hearts.  This is very painful, for all of us.

grosser by the minute

Ok so I actually am feeling pretty shitty now.  I had thought that this would just be isolated to my tonsil.  Nope.  Sitting here cooling my heels wait wait waiting for the doctor’s office to open.  Oh how they must hate these 2 minutes after they turn on the phone calls.

sabotage!

My body is a traitorous bastard.  Yesterday was a tough day at work.  Not horrible but just confounding.  But today, I told myself, would be better.  More evenly paced schedule, boss is out, staff member who took an ill-timed holiday (which stressed some of the other staff out) is back.

And then I woke up with a very sore throat.  Just one part of my throat.  Hm.  Well sore throats are not rare for me.  Reflux = waking up with a sore throat often.  And it’s allergy season.  However, I just looked in the mirror and woah, that’s none of the above.  Looks like a wee abscess – very localized, very red, and very ah… infected looking (trying to avoid the use of the adjectival form of “puss”).

So instead of a manageable 8 to 8.5 hour day at work, here I go, burning through some more sick time so I can get it looked at and get an antibiotic.