What can you do?

I know some friends and family are hopelessly unhelpful when it comes to supporting someone with a chronic illness, but a great many more are just unaware of what to do.  If you’ve never been there, you don’t know.  And you probably don’t want to seem like you’re imposing, or insulting someone.  And sometimes, your offers are rebuffed for what seems like no good reason.  I’ve been on both sides of this and I know it can be tricky to navigate.  Here are some tips I want to pass on.

Keep in mind that help or support needs to be really and truly freely offered and given.  Take dinner.  Helpful if you know the person’s dietary restrictions and needs and can truly abide by them. Offer, kindly and without strings, to make and bring something that can be refrigerated or frozen.  What is less helpful is an offer to invite yourself over for dinner, or invite your loved one to dinner.  They may not be up for entertaining or being entertained, and if your offer comes with that string attached, they may refuse.

I’ve long wished for a way to give a service like PeaPod as a gift.  For readers outside of the area where you’d know what that is, it’s a service that lets you buy your groceries from a local supermarket online and then arrange to either pick them up bundled and paid for, or have them delivered.  My god I would love the latter.  Probably there is a way to do this, and if anyone figures it out, tell me.  I have a dear friend I’d love to do this for.  Not as a “I’m buying all your groceries forever” kind of gesture, but as a “hey, I set you up with a gift certificate that pays for 4 deliveries of your groceries so you don’t have to use up your resources staggering through the supermarket”.

Pet care.  Pets can end up being affected by their owners’ illnesses too.  I myself have forgone having a dog for years now because I know I do not have the energy that it requires to care for one.  Sometimes, you had the pets before you got so sick.  Sometimes, you need the pets for the love and comfort they provide but have a hard time managing to care for them when things get tough.  A good case in point:  I have a good friend who is going through a real upheaval right now.  She’s got a couple of chronic illnesses, endometriosis, migraines, been diagnosed with fibro and frequently struggles with the “fibro fog”, intense fatigue, and chronic pain.  Her husband lost his job about two months ago, just before she started a new full time one.  She had already been worried about whether she would be able to do the schedule this new job demanded, then about a month into it…a month of her husband having no luck looking for jobs locally, her husband got a job one state and over 5 hours away.  Money is incredibly tight and he has to take it.  So he’s moving to be near the job, and will come home on weekends to be with her.  But it leaves her all week with managing their household and her new, already incredibly challenging full time job alone.  Her household consists of three cats, one of whom is seriously ill and needs timed medication including subcutaneous fluid injections; and two energetic labs that they rescued about a year ago after her husband’s dog of many, many years died.  My friend needs to find someone who can help her with the meds and with doggie care during the day, her job keeps her out of the house for 10 hours a day three days a week and you cannot leave energetic dogs alone for that long without big behavior problems.   While she lives far away and I can’t offer to pet sit (and my own schedule and illness wouldn’t allow for it), I can offer to pay for a few days of doggie daycare to give her a break now and then.  It’s about the cost of a good mani-pedi.  So I’ll paint my own damned nails and toes once a month.

Laundry…especially if your loved one has to do laundry at a laundromat.  Offering to come help carry clothes in and out is a huge help, and you can schedule hangout time while you wait for the cycles to run.

Yardwork and snow removal.  When Mr. Patient is out of town, I have images of me wasting away in my home, snowed in.  There is no way in hell I can shovel.  If you have a friend with a chronic illness, offer to clear snow or pay a local kid to do it.  Yeah, your friend might have a capable spouse or family living with them, but if they are supportive, they’re already doing the grocery shopping and the laundry and the cooking dinner…you get the picture.

If you’re a really close friend or family member, you could offer to drive them to a doctor’s appointment now and then.  Doctors’ appointments can sometimes involve painful tests or procedures, and even when they don’t, they can be emotionally draining.  If I had a nickel for every time I have had to pull over and cry while driving myself to or from a doctor’s appointment, well I’d have enough for a cup of coffee at least.  So know that if you offer to drive, you are offering to be moral support too.

The time to pitch in is when you hear of a change.  Is your friend having surgery?  A flare up of symptoms?  Is your friend’s spouse going out of town?  This is when your friend will really need the extra help.  And it’s better than flowers or cards or fruit baskets.

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accentuate the positive

I recently “unliked” an EDS group on Facebook.  I hadn’t been active in it, just a reader.  But then some drama broke out and I found myself starting to seethe reading the comments people posted…and I decided to just drop it.  I have no idea what kicked off the drama, from what it seems, someone must have written something nasty to the moderator/administrator.  And then all hell broke loose.  What got me riled was reading “supportive” comments of people which went something like this:  “I hate all the whiners who let the disease take over their life…”  Basically, multiple slams on people who are not chipper and positive and “can do” in the face of a debilitating illness.

I have no room for that in my life.

Everyone has bad days.  People with chronic, life stealing illnesses are going to have a lot of them.  And a lot of “negativity”.  I guess this is a sore point for me because I find that the “buck up and shut up” sort of attitude is so prevalent in life and serves to perpetuate the belief that if you are not up and running marathons, your “rotten” attitude is responsible for your poor physical state.  You get this from so many sources in your life, when this attitude is embraced by members of a “support” group, I run in the other direction.

If you ask

be prepared to listen to the answer.  Queen’s post got me thinking about how and when and why people ask things like “how are you?” “are you getting better/worse?” and “are you ok?”

This is my single best piece of advice I can give to anyone who is struggling to find ways to support a friend or loved one who is experiencing an illness – really any long term crisis or effects of trauma.  As a child abuse survivor and a person with chronic often debilitating health problems, I run into these sorts of questions with some regularity.  As a younger adult, I was not great at navigating them.  I’m getting better.  For example, I now know to preemptively tailor my discourse depending on my relationship with the asker and their level of “needing to know”.  Work and casual acquaintances get a limited version unless more detail is necessary for some practical purpose (e.g. continuing sick leave or ability to travel).  Friends and family though, they are tough because they should care when they ask, that should be why they are asking, but often I find that they don’t.  It’s probably inaccurate to say every time I get the “then why the fuck did you ask?” feeling, it’s because the asker doesn’t care, even when they act carelessly.  They may just be asking or reaching out for the wrong reason.  Here are some of the wrong reasons I’ve encountered, roughly in order of least to most problematic:

  • Reassurance.  This is by far the most common one I’ve experienced.  The “reassure me that you are ok because I am so worried about you!” line of inquiry.  I call foul on this one because come on, the last thing someone who is suffering with burdens like this needs is to have to candy coat stuff for a friend or family member.  Better not to ask, but do something nice or helpful for them.  And if you are so paralyzed by fear and concern for your friend or family member that you can’t even bring yourself to do something, then a quick “I’m thinking of you” is a reasonable way to reach out without burdening your friend or family member to selectively share with you so YOU feel better.  Sometimes your friend or loved one doesn’t really want to get into it, sometimes s/he does but only if s/he feels that the listener is going to LISTEN.  Another uncaring ear is not what is needed right now, and ears that are attached to heads that are full of only self concern are, in some ways, worse than uncaring – they are demandingly uncaring.
  • Guilt.  Haven’t called in a while?  Haven’t “been there” for your friend?  Feeling bad about it and want to show that you aren’t a big jerk?  Well, odds are your friend would appreciate a nice gesture or maybe even a chance to talk, but s/he is unlikely to be thinking very much about how much you suck.  See, s/he is wrapped up in his/her own world of shit and is not sitting around ruminating about how much better life would be if only good old so-and-so would drop a line.  If you decide to do something out of guilt, try to be more sensitive to your friend or loved one than to come across as punching a friendship time clock.  If you can’t muster up a sincere effort, then see my advice above or just leave it until you are ready and really actually WANT to be there for your friend.
  • Obligation.  Much like the guilt one, except more likely to happen in families.  See guilt for most of it.  I’d add that if you are in fact the family of someone in a bad situation, and if you’re not an asshole, you really should try to at least be practically helpful now and then.  Think about what you legitimately can do without putting yourself out too much though.  People with chronic illnesses can be mighty sensitive to any whiff of grudging, resentful assistance or listening.  Therefore, if you can’t do something with a genuine, sincere heart, in most cases you may as well keep your help to yourself because if your friend picks up on your attitude, it’s going to suck.  If you are wondering what things would be appreciated or helpful and don’t think you can or want to ask the person, ask someone who actually IS there for them.  That person will likely have some good ideas, even if it’s for ways to help them so they can better support your friend or family member.
  • Martyrdom.  Yes, it happens.  The trauma/drama vampires.  I don’t have too much to do with them, I think I’m not really needy enough for them.  I have run into a few at work.  They love to hear all
    edited screen shot from Nosferatu with dialogue bubble reading "Oh did you hear about Carol?  The Poor thing!"

    * gossiping coworker or trauma vampire?

    about the troubles of others.  It makes them feel as if they are being compassionate.  They are, however, not deeply invested in other people’s troubles and there is a certain perversion that will creep in.  They will likely share private information with others so that they can express their compassion and receive social approval for it.  There is no advice I have for these people because they are sick, truly fucked up individuals on whom any advice would be wasted.  My advice is for everyone else:  keep away!  If you’re the target of their “compassion”, learn to change the subject.  Ask them about their mother or something.  If you’re just a friend or member of the network who is now being regaled with tales of a tragically sick colleague, classmate, friend, or distant family member, at a minimum, do not reward this parasite with praise or anything positive.  Ideally, if you’re up for it, you can consider a subtle reprimand like “wow, I had no idea so-and-so was dealing with so much. And she’s ok with you telling everyone about this?” and if you’re a good, stand up person and want to help, or just offer support, reach out directly – not through the trauma vampire – and tactfully.

As a person who daily deals with limits which are sometimes impossible for me, I would honestly prefer patience, compassion, and respect than a possibly misdirected demand for me to brief you on my troubles.  I’d trade all the flowers and cards and abbreviated visits and meandering awkward conversations for that.

* Photo © 2009 Nosferatu photo by King Chimpcreative commons license

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.

pre-pre-op

It’s two days until surgery.  So far, most of my anxiety has manifested about other things.  However, surgery enters my dreams.  Last night, I dreamed about a bad bowel prep – I started it too late and was at the hospital the morning of the surgery thinking “what the hell was I thinking?!”

This morning, I’m preparing to go to work for the first of the last two days pre-pre-op.  My boss will be in today and I suspect she’ll have some annoying crap waiting for me.  This is her tendency.  Most stuff is ready to go – a few last minute details that had to wait until the last minute will be occupying my time today and tomorrow and then I’m off to be cut into and cut out of.  It’s a creepy feeling – surgery is an assault on the body, it’s just a very controlled assault.

This weekend, my siblings have been silent.  My sister invited herself over with a somewhat cranky imperative on Friday.  She had left a lot of stuff here last week after christmas.  “I really need to come get my stuff” she told me Thursday night.  I invited her to come over on Sunday.  Instead, Friday I got several increasingly irritated texts and phone messages from her (I had forgotten to turn on my ringer so I got them all at once), the last of which said “I’m down the street and I really NEED my stuff”  So she came over.  Surgery came up as an afterthought: “oh that’s right, when is that again?  Wednesday?”  Yes.  “So you’re staying the night Wednesday to Thursday?”  Yes.  And that was that.  No offer of help or asking my husband to call her post-op with an update.  Nothing.

Little brother replied to my new year’s eve text Saturday AM with a “happy new year to you too, how’s the cat?” and that was all I heard from him.  Also no requests for information or offer to help out, although at least he had stated in the last month that he would be available if we needed him.

I think the two of them are just too freaked out by me getting sick or being infirm.  That’s my theory at least.  I do wish they’d grow up a little bit though.

sister act

Here’s an email I sent to my brother and sister on Saturday morning.

Subject: request (birthday)
Hi,
I know we have plans for my birthday, brunch. And I’m still planning to do it. But I might need help between now and then and the help might make brunch less of an option. Here’s my pitch:
My doctor has ordered a month’s worth of weekly IV vitamin therapy since I have a few levels that are low. While they are low enough that treating them might help me feel better, they might not be low enough for the insurance company to pay for them. They don’t have a protocol for how malnourished you have to be before they will pay. Plus, quite recently, my insurance company refused to authorize my arthritis pain medicine, a drug that is a lot like motrin but without the stomach destroying parts. They will now pay for 5 days worth of that pill a month – so I’m allowed to have 5 days worth of pain a month and no more unless I’d like to become addicted to a narcotic, which they will pay for. Anyhow, my point is they are fully capable of doing stupid crap like that, so as much as I’d like to think they’d pay for the IV vitamins, they might not.
And that brings me to my request. I’m going to get this, at least one or two treatments. If they don’t pay for it, would you be willing to pitch in some money toward it as my birthday present? No more than whatever you’d have spent on me anyhow. I have literally no idea what the IV vitamins cost but I cannot take feeling this shitty and if something as innocuous as vitamin treatments that would help, then I will absolutely try it.

My brother replied within 2 hours.  My sister called that night to see “what was up”, to tell me that she had a headache the day before, and to say that she figured if she had one I probably did too.  Anyhow, she did not mention the email.  Saturday was a wretched day for me health wise.  Sunday was not great.  Today is ok.  I texted her today.  She promptly called.  Ugh.  Not up for a call.  So we talked.  I mentioned that I might go in a little late tomorrow so I can get a blood draw, stop at the hospital to drop off the script for the IV fluids/etc because nothing was open all weekend to get going on this stuff.  She said “yeah, the vitamin thing.  Will your insurance pay for it?”  Ok.  So she got the email, and I was pretty frustrated to hear her ask me if I knew if the insurance company will pay for it.  The whole point of the email is that I don’t know and probably won’t know until the bill goes to them and they chew on it for a while.  “I don’t know yet,” I said.  Still nothing from her on my request.

I honestly have no idea if she is being spacey or if there is intent here.  Both suck, admittedly the latter sucks much more.  Anyhow, I emailed her later today with a forward of the original message and just wrote “Can you let me know?”  We’ll see how this goes.  Could be a bit of a reckoning coming up here.  She doesn’t need to pony up, but what kind of person doesn’t even acknowledge the request?  That’s some seriously childish crap right there.

wtfFriday

On Wednesday, I sent an email out at work to the faculty and staff list letting everyone know I’d be leaving early (boss lady having approved my leaving early for medical procedure) so they would know that I wouldn’t be available for student walk ins.  It’s been a busy week, with it being the 1st week of classes.  “I need to leave at 12:30”.  At 12:28, my boss walks in with a student.  I have my bags on my shoulder, am turning off the air conditioners, and am literally halfway to the door.  She stops me and asks if I have a moment to meet.  “Oh, no, I’m so sorry, I don’t.”  She looks around.  “Well can we sign up for a time to meet with you?”  “No, I do that electronically and I just signed off…” I tell her.  I give the student my card and tell him that if he emails me I would be happy to set something up for next week.  “Are you leaving?” she asks, all alarmed and taken aback.  “Yes.  At 12:30” which by that point, it was.

At 2:00, I had an appointment for an MRI of my brain (with contrast) and my “orbits”.  I’ve had an MRI of my brain before.  Twice.  Once diagnostically without contrast in 2005 and god only knows where because I tried to track it down in 2008 and I think the place closed.  And once in…oh, maybe 2004? for a friend of a friend who was doing research at Yale and desperately needed a fill in subject after one canceled on her.  I don’t mind them too much, just the laying still part.

I did mind the one yesterday.  See, the body’s “new” or at least new relative to head MRIs, trick is overheating.  And MRIs make you just an eentsy bit warm sometimes, more so if you have metal fillings, which I have.  I did NOT go in there thinking “I’ll be my metal fillings will heat up.”  No I did not.  I went in there thinking “I hope I can lie still long enough for these pictures” and “I hope my head doesn’t hurt too much while I’m in there” and “I hope the sound sensitivity isn’t too bad because these things are loud” so this wasn’t some self induced symptom set.  Believe me, I was as surprised as anyone (i.e. the techs) when I got so damned hot I felt like I was going to puke and pass out in the tube and had to come out three times before I finally said “take the headphones off, take the sheet off, take my socks off, and roll up my pants.  If that doesn’t work, I’m taking off my pants because I want to get this done.”

This god damned blew.  But minus some items of clothing (and snuggly warm headphones), I was cool enough to get through the rest of the scans including the contrast just fine.

Now I know how microwave popcorn feels.  Except minus the buttery goodness.

Ok, out into the not hurricane (I live in land of B.A.T.H.s, remember?  According to the major news outlets, we were going to get a HUGE hurricane yesterday.  It turned out to be a mild to moderate rain storm that barely registered on the head/joint pain scale).  Then home for some food then off to the PCP for the follow up on many things.

And that did not go so great.  In retrospect, I don’t think it could have gone great.  I was thinking of writing this as if it did go great and then transitioning it with a reveal, a “tada” moment where I pull away the table cloth after setting out all that fine china and silverware so nicely (in case you aren’t following my very tortured analogy here, I’m going for the settings being my expectations for my visit, which I had arranged just so).  But I decided I’m just too drained and tired and, well, yeah.  Just too pooped for that.  Overall, it was productive and that’s good.  But ugh.  It was rough.  For everyone.  Poor PCP.  Poor me.  Poor husband who was taking notes.  Poor nurse who had to stay until after nine PM (yes, you read that right) when we finally finished.  Poor lab tech who will have to make sense of this req.  Poor ambulatory care staff at the local hospital who will have to administer the IV fluids with Mg and vitamins (yes, oh god thank god finally). Poor neurologist who will get the aftershocks of this appointment in the form of “wtf am I on this CMD for? It’s not doing shit and it’s making several things worse and I had a total breakdown in PCPs office and I think this CMD probably was a part of that”.  Did I say poor me yet?

And did I say poor PCP?  My celebrex rant, triggered thusly:  he suggested a consult to ENT for the sleep thing, I asked “ok but I have to tell you, I’m a little less game on this right now.  I’ve been catching some crap from my boss about missing work and so I’m sort of trying to prioritize what I miss work for.  So would the ENT be a consult where they have really specific directions for what to do or would it be a consult where they would be like the endocrine attending, like ‘um, I’m not gonna do anything really useful right now while you have time to do anything, so I’m gonna send you to someone else who also probably won’t do anything useful, i.e. a dietician, and then I’d like to see you in two months’?”, truly, I did say that.  And he looked taken aback.  So I went on.  I need to learn to do something about that.  I apologized and explained it’s been a rough summer.  I referenced some crappy history with doctors (being told I was having seizures all through adolescence when really I was probably just fainting from hypoglycemia and no one thought to check my blood sugar), that I’d had some things happen recently that kicked that up.  He asked what.  I said the neuro’s nurse had been crusty.  He said “nurses don’t count”.  Then I told him about the celebrex thing.  And he listened.  Then he said very quietly “and here I thought I was doing a pretty good job”.  It made me feel really, really shitty.  I apologized.  But he went on.  He told me that the insurance companies play games with them.  I said I know (but the nurse didn’t even submit the authorization for a month).  He told me that it’s hard to know what it is that they want you to say.  I said I know (but she didn’t ask me what it was I took it for) and that I didn’t think to tell her what I took it for.  His manner was not accusing or angry, but defensive.  It made me, well, I suppose scared.  I thought about this alot later.  Well, honestly I’m still thinking about why it would scare me and I suppose it’s because of parents (sorry, quoting Mel Brooks, High Anxiety).

Truly though, it’s the left overs of my mother’s emotional fuckery – the constant threat that she would leave and her leaving meant leaving me, us, to the physical abuse of our father and the sexual abuse of our grandfather (who lived with us).  Not that she was exactly a champion but (a) less abuse happened in her presence and (b) she was a potential champion to me (I think, not sure about that one…still working on it).  Anyhow, sorry for that detour down psych lane, but it was/is quite relevant.  So I was/am scared by my PCPs defensive, distancing reaction to my feeling that I was “abandoned” (his words, not mine) by his office this summer wrt the celebrex and pain management.  And please keep in mind, when I talk about getting authorization for my celebrex, we’re not talking about me being unhappy in a customer service sense, it’s not the kind of let down you have when the RAM chip you ordered by mail doesn’t arrive the exact day UPS said it would – we’re talking about not having something to take for the fuckloads of pain that go with having your period when you have endometriosis on/in your rectum and growing into the walls of your uterus, growing into the ligaments holding your uterus in place.  A spot on a ureter too.  Yes, they cut it out of some of those spots (not all).  But it grows back and it’s been three years.  So this is a significant amount of pain.

I went through two periods this summer with inadequate pain control, on top of the vertigo, the headaches, the fatigue, the…everything.  There are stretches of many days of this summer that are a shaky smear of shit, blood, pain, nausea and grief.  And if you don’t know why grief, you and I are at different points in the whole being sick thing.

So.  He’s telling me basically how hard it is to be a doctor and I do feel for him, but I think it’s triggering all this “eek, he’s going to abandon me more now because I made him feel questioned/less than perfect/less than adored!” feeling and so I start crying and then just fucking SOBBING uncontrollably.

Husband, who says he can handle all this, is still sitting in his chair.  Later he tells me that he didn’t know what to do.  I tell him gently “I think that it was good that you didn’t say anything because he was clearly feeling defensive and that could have made it worse.   But I definitely could have used some comforting.  I think a physical presence would have been nice.  A touch – in the future – god I hope there isn’t a future.  But you can come over in the future and touch me.  That would be nice.”  Husband thanked me for telling him that.  He sounded sincere.  I don’t think I’m resentful for him not moving while that happened.  I hope I don’t become so.

And now, it’s Saturday.  The sun is out.  The heat has broken.  My fillings finally don’t feel hot.  I have a script for IV fluids and various things I am deficient in from the local hospital’s ambulatory care although I left rather quickly in the nine-PM hour from the PCP’s office last night and only realized as we turned onto the foggy main road that I had totally neglected to ask how to access this service.  I guess I’ll figure it out.

you don’t have to be

“I worked through MY cancer treatments!” a coworker (Linda) said Tuesday.  The context was this.  Another coworker, let’s call her Pat, was talking to Linda and me and the about seeing a family member at a funeral.  The family member was super skinny and Pat was speculating on whether the family member has developed an eating disorder.  “Is she sick?” I asked.  “I mean, does she think she’s healthy?” “Oh, I don’t know” Pat replied, “She’s working still.  At the Cheesecake Factory.”  “Working doesn’t mean she’s not sick,” I said to Pat. “Not these days.  I have a friend who recently worked straight through all her really intense breast cancer treatment…” I was cut off by Linda “I worked through MY cancer treatments!”  “Yes,” I said, “because that’s what people do if they can or when they need to.  If they don’t have a partner who is employed enough or enough sick time or grown up siblings who can come take care of them.”  Linda nodded emphatically.

The conversation went on for a bit about Linda’s cancer treatments (some month’s of radiation) and my friend’s (18 months of infusion chemo).  I started to head back to my desk and Linda followed.  She caught up and said “I wasn’t gracious about it.  About coming in to work. I complained all the time about how bad I felt.”  I was horrified that she had even used the word gracious.  “Seriously?  You were getting radiation therapy for cancer!  Fuck that, the hell with gracious.  You don’t have to be.  I think it’s fair to say you can complain about cancer.”  She laughed.  I went on.  “My little brother has this really great concept.  It goes like this.  Our mother has this habit of doing nothing or postponing treatment or assessment when she’s sick, even when she’s really sick.  But she complains.  Oh boy does she ever.  She’ll walk around complaining non-stop.  As an adult, my brother’s attitude is now ‘if you won’t get seen, then suffer in silence!’  But if someone is sick and is doing what they can to treat it or to address it, then they can complain.”

I’m happy I had a chance to express this at work and to express this to this particular person.  The reason is this.  Pat and Linda have both voiced their opinions that illnesses (of certain vaguely defined types) can be overcome through willpower alone.  They would not put it like that but that is the crux of the belief underlying what they’ve said.  And it’s been painful to listen to.  It was good to have a chance to have a different kind of discussion.

prepping for your prep

So.  Bowel preps.  They suck.  Thankfully, the prep for the capsule endoscopy wasn’t super aggressive, i.e. I didn’t have to drink 4 liters of foul tasting gunk.

However, with any bowel prep, there is wear and tear, emphasis on tear in my case.  So I thought I’d post a couple of tips – most, unfortunately, learned the hard way.  As a bit of an aside, I think it would increase patient compliance with the prep if these tips or ones like them were discussed in advance rather than relying on the generic instructions given remotely to the patient.  E.g., my prep instructions were communicated to me via a not terribly well written one page instruction sheet sent by snail mail.  They left me with questions like “it says I can have a ‘normal breakfast’ the day before the procedure then switch to clear liquids after breakfast.  But I’ve been instructed not to eat breakfast – I snack starting at about 11:00 AM on things like rice crackers and yogurt.  What actual time does ‘after breakfast’ translate to?”  The last colonoscopy someone tried to schedule for me involved the doctor’s office INSISTING I do the 4 liters of gunk prep.  “But I really don’t handle large volumes of anything in my stomach well.  I’m worried I’m going to puke it up”.  They just gave me a script for two bottles, you know, so I could drink MORE of what made me vomit and told me to try to drink it slower.  Seems it was a one size fits all bowel prep, and the size we were using as the standard was an obese 65 year old man with poor kidney function and a history of heart problems (hence no more of the much more palatable Fleet Phospho-soda prep).

Regardless of what prep you’re given, there are some practical self care tips I wanted to share.

– Prepare your surroundings.
You need access to a clean, well stocked, well working bathroom.   Access means, if your surroundings allow, your own dedicated potty for the duration.  If not, then see “prepare your loved ones” below.  Well stocked means buy extra toilet paper – splurge on the soft stuff; some air freshener (I like the “pure citrus” brand ones); and I also recommend getting some wipes.

picture of a double pack of Charmin flushable wipes from Drugstore.com

Double pack - a good idea.

The wipes to get are usually found next to or near the toilet paper.  Charmin and Cottonelle make them, and there is usually a generic – I go with Charmin because it’s the one that doesn’t have Aloe (which I’m allergic to).  Although the packaging proudly declares that these wipes are flushable, I wouldn’t recommend it.  The last thing you want is a clogged toilet in the middle of your prep. To dispose of these, I recommend either something like the Diaper Genie or (if you don’t have one) a dedicated small trash bag that you will tie off and dispose of promptly when needed.  If you don’t have one already, a night light in the bathroom and en route to the bathroom is key.  You may end up needing to go after bedtime.  If you’re like me, you won’t want to turn on all the lights and wake everyone up if you don’t live alone.  But you’ll be in a hurry and hurrying + unsufficient illumination = fall-down-go-boom.  So get a nightlight (i’s a good idea to have it in general) or keep a flashlight by your bed.

– Prepare yourself.
Mentally and physically, you will need things to get through this intact – and oh yes, I do mean intact.  Mentally:  You’ll need something to keep your mind occupied and it’s best if you have something that is portable since you’ll need to take it on the road so to speak.  If you have an iPad, smart phone, netbook, or other portable device that will allow you to access media, plan to use it.  Stock it up with TV shows, movies, audiobooks, digital books, games, something.  You’ll be using it during your many stays on the toilet.  You can also just go the old fashioned route and get a book, some magazines, or a set of crossword/sudoku/etc. games.

picture of a sitz bath in place on a toilet

you can use the tub instead, but this is quicker.

For physical prep, look into getting a sitz bath. If you don’t use it during, it still might come in handy after if your delicate bits take a beating.

tube of A&D ointment

get some

I also cannot stress enough how important it is to use something like A&D ointment during your prep. I didn’t and ended up having to do sitz baths + vitamin E oil application for a week after on account of a fissure.  Fissures hurt.  A lot.  My post prep care includes sitz baths 2x a day (I’d do more but I really just can’t do this at work) and vitamin E oil (topical).  This has helped considerably, but it would have been better to have not needed to do that.  And this is what I get for being lazy about my prep.

– Prepare your loved ones/cohabitants.
The really nice thing for them to do is to not eat in front of you or cook food while you’re around and prepping.  The night of my most recent prep, as I worked away with resignation at my second clear liquids meal of the day, I asked my husband if he was going to eat anything.  “I did,” he told me.  “I surreptitiously scarfed down a pb&j wrap in the kitchen.”  It was so sweet that I nearly cried.  Unfortunately, he made up for that later by eating nuts in front of me…but truly, I don’t much like cashews so other than the mouth noises (which made my stomach grumble), it was pretty tolerable.  Which brings me to another point.  If you’re the meal planner, then either plan for the rest of the family to eat something you detest or, better yet, to just go out and get pizza.  The only rule is they must eat it all at the restaurant and NOT bring any home.  You don’t need that sort of appetite trauma.  I’m not going to get into what you can and can’t eat – that one seems to be covered relatively well by the standard bowel prep instructions given out by doctor’s offices or endoscopy centers.  I will point out that College Inn makes chicken, turkey, and vegetable broth in a box/carton package now.  This was much more convenient for taking to work to heat up for my clear liquids lunch (microwave in coffee mug).

Another important part of preparing your loved ones and/or people you otherwise live with is to make it very clear that you require “dibs” on the bathroom if there is only one.  They need to check with you before going, and they need to make their use snappy.  No lingering about.  If you have evening showerers in your home, I recommend that they take their showers PRE-prep.  And lastly, while it might seem like a good idea to plan a movie night or to watch shows during your prep (because you’re stuck at home and going for a bike ride or even a walk around the block is not an option), keep in mind that you’re going to be up and down a lot.  My husband and I came up with a sort of protocol about pausing the movie we were watching, but still, it became pretty evident that I just wasn’t going to be able to watch this movie unfragmented.  Accept that in advance, maybe pick something you’ve already seen but don’t mind watching again, and everyone will be happier – believe me.  Lastly, no calls.  If you have the kind of touchy family that I do, maybe let them know that you will be indisposed that night so they either won’t call or won’t be offended if you don’t answer.

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?