Sunday, July 20, 2008

Disability, age, illness, medicos, society and biology

Yesterday, I sat in the wheelchair bathroom on the Coho (the lumbering ferry between Victoria and Port Angeles), and watched the pitter patter of feet. I was sitting there because along with all the other parts of me that don’t exactly work anymore, that includes having a normal dump. In fact, I would be having constant diarrhea if it weren't for taking a prosthetic probiotic every day. This is because I don’t have enough blood circulation to keep the natural flora and fauna alive in my intestines. Also, like Parkinson’s patients, I have loss of muscle, which when I say includes the right side of my body (including my tongue and swallow muscles), doesn’t stop at the arm, but includes the ability to move things along the intestines.

So, I was IN the bathroom because a ship going BACK and FORTH like a see-saw actually replicates the motion of an intestine and I was hoping to do what I had not in several days: have a bowel movement. Except that many females see the “disabled bathroom” as the “big roomy bathroom” or “the bathroom I can watch my child have a pee easily.” So while I sit there alternatively doing a bit of pushing and waiting for that feeling that the…um…cannon is ready to be fired, people come every minute or so and check to see if my stall is empty (it is on the left hand side, away from other stalls). And some give up and go to the other stalls, some wait 30 seconds and THEN give up and some go out and then come back again. Until the whole, weight of social expectation for me to vacate this toilet makes me want to scream at the next pair of feet walking and waiting, “This is a DISABLED TOILET, for people with DISABILITIES, and that might include HOW WE EXCRETE stuff!”

Today, I am talking about things entirely natural/biological and how for some reason we the ill/disabled (all of us really) have entered into a social agreement with both the medical establishment AND society to not talk about this stuff. I am talking the biological things of being human, and being female: hormones, burps, saliva, gas, bowel movements, pee, menstruation, hair (both the arrival and departure of such) and the changes in these things with illness and disability (and age!). Most of this will apply to males too, though if you start menstruating, please see your GP RIGHT AWAY.

By the way, I apologize to all my Japanese readers (particularly Ai) who will find this post probably so openly rude that either they or I am supposed to throw myself off a cliff. See, a couple years ago I was a “hold breath, go in, do the business and get out” public bathroom person. In fact unless the public toilet was empty, I would not even fart or so much as take a dump. Becuase I just couldn’t come out and do the washing of the hands while pretending I have NO IDEA where that stink has come from (even though we are in a PUBLIC TOILET!). I was THAT trained.

Things have changed. When I was packing in the apartment to do an overnighter over at Cheryl’s place my brand new, and super nosy (and slightly obnoxious) care worker was there (For example, she went, “God, no one does the dishes, this is just like at home, where my kids just leave me piles of dishes to do” – Well, actually YOU are here to do the dishes lady, that’s what I told the scheduler when they told me they were putting in someone new, and I don’t think your kids pay you $20 an hour; so that's why you get $40 to wash some dishes and put them away and make my bed). And I was adding an extra pair of underwear as well some jogging bottoms in case I peed myself that day during a seizure. And the worker wants to know if I am leaving for a while. I don’t tell my care workers my movements, and not on our first date, so I said I was going for an extended appointment and that these were in case of a seizure (true). Well, the thing is that planning and packing extra underwear for when you WILL pee yourself and there is urine all over your clothes is pretty surreal. But once you have HAD that happen or a few close calls, then it isn’t surreal, it is just IS. And while it may not be something people talk about, it is my reality (and for more people than just me).

Another example is how everywhere I go, I carry paper towels or tissue. This isn’t because I have allergies but because I use oxygen a lot. And the nasal flow makes your nose drip, and it also give you bloody noses (slow dripping for me). Also after a seizure, I sometimes, depending on the seizures and how I am lying, drool on myself, drool on the floor, drool on whatever is around. I can’t swallow and half of my face is doing the ‘seizure leer’ so drool happens. That’s just reality. Also my care givers or Linda may try to help me have a drink and I can’t swallow and it runs out the side of my mouths and down me. That’s why we moved to the “suck and swallow rule” which sounds like some sort of brothel extra charge but means, I have a straw and if I can’t suck liquid up the straw, likely I can’t swallow either. I am supposed to be ashamed of this. Because when this happens people look away, even as Linda has to search for paper towels and no one offers them because they are so busy NOT looking (which means they are). Because I am breaking the code of what is acceptable biological behavior in public: The one which still lets a guy adjust his ‘package’ every two minutes but I can’t drool.

Now, thanks to Sara at Moving Right Along, who mentioned menstruation, I can finally talk about this simple and monthly aspect and how it relates to the medical establishment. Because the medicos, while accepting that they are looking for often life changing problems or that you are sick or disabled seem to believe they are treating some form of robot. Before going into the MRI, I was asked, “Do you have metal shards in your eye?” I was not asked if I had seizures, and I was kept three to four times the length of time I was told I would be in there. And I came out unable to speak clearly because I was hot and on my back. I could have, depending on week and circumstance come out with pad full and a red spot on the lovely gown (or drip down in my bum). I am sure this too would have flustered the staff. But when did I sign up to stop being a biological being?

Because of seizures I now have gas the evening and morning after them. This was explained to me because as I gasp for air and don’t yet have control over my muscles, some air goes down my lungs, and the other goes down my stomach. Well, it doesn’t stay there but works through and shows up at the bottom end as a fart, actually quite a few farts. And since I have a few major seizures a week I could be horribly mortified about this. And I was until it was explained to me in a calm way that indicated that “This is what happens, this is the new reality.” Again, is that what I WANT to do in the MRI machine or during a medical procedure? No. But during weeks of lots of medical procedures, that is what is likely to happen. I will fart, maybe more than once. And when that happens, the techs say nothing or make the “face” because of course, they are testing for rare autoimmune diseases because I am WELL? Look, that contract I had which indoctrinated me about how or when I could fart or pee, or drool or how long bodily functions should take. That ended when my disability jumped aboard.

I was actually quite irritated at the lab AFTER they took my blood because AFTER fasting all night and morning I was to fill a pee cup ALL the way to the top. Now, I could have incontinence and peed that into my sheets or have it in my Depends I may have been wearing (common for my condition). And saying that I can’t leave until it is full when I am not allowed to eat or drink isn’t going to make more pee magically appear. Instead of incontinence, I have ‘retention’ which means that getting a stream to appear is sometimes quite a trick. So I was in the lab bathroom starting and stopping and starting and stopping and putting a fist into my bladder to try and get a stream going, so I could capture my pee (all accompanied with much use of colourful language), because it was coming out without pressure, just a dribble which flowed down to the anus and then dripped into the toilet.

I finally get the cup full and am rewarded with getting a jug and am to “recover” ALL my pee for the next 24 hours. Well, that isn’t possible so urinating becomes a big hassle of not just WAITING to pee but trying to get enough stream that more dribbles in the cup than down the outside. But that is my condition. And I am pretty sure that there are many other people who are out there with conditions which have their own manifestation and yet we are treated as if we should be embarrassed to talk or mention these actual diagnostic symptoms of our condition.

I rolled off the Coho yesterday with a dried white trail of drool on my chin and two cold break-packs peeking out of my top, having been shoved in my bra. That is what it took to make it across to Victoria. That is also what happens in Badminton, when one cold pack is warm, I toss it to Linda, she throws me another and I am out there on the court and with an “excuse me" I reach in and put it on my breasts, holding it in place with my bra. Yes, not exactly out of the Miss Manners textbook, but then, where is the “Proper Etiquette when doing a sport and not sweating” section?

Okay, now on to the forbidden topic: hair. Many woman have facial hair. But many treatments also produce facial hair; if you have thyroid problems, adrenal problems, or ovarian tumors or if you have steroids to treat cancer (even some birth control pills create facial hair for women) along with other medical issues you WILL end up with facial hair. Except women don’t have facial hair right? Well, that’s what we strive to make sure everyone, including other women believe. According to CNN, 20 million women remove facial hair AT LEAST once a week, and that is just the way it is (at least 40% of women will admit in interviews having facial hair AND removing it – about 5% need to remove it daily). Once you get deep into medical treatment, just wait for it (kind of like weight gain, that usually shows up too!).

So do I have facial hair? Yes. I have since I went into the deep dark of Anorexia for several years (throws your hormones into a blender of confusion and your hair on the scalp falls out while you get facial hair). In the last year, or particularly the last six months, that cycle seems to be happening on it’s own AGAIN. The doctors don’t really care, particularly male doctors (“I am sure it is just your thyroid dying” or “That is a non threatening condition”). Do I care? Hell yeah! But do women go, “So how is your facial hair growth?” No, we all pretend that nothing is happening. Some of the same way we pretend that legs and underarms magically lose hair. Only now I am too damn tired to shave BUT I do sports like badminton, so I try, every so often to shave and thus not flash everyone the fuzz when I raise my arm.

Since, the first thing everyone does in a seizure or passing out is touch my face, or fumble around my upper lip with oxygen feed, get it backward, fumble some more. Then no, when I am most helpless I do not like it that people are finding that I have facial hair, but what to do? I could spend time plucking, but like shaving, too much energy. I have been trying electro now and then (on prescription) on the basis that a) Laser is darn expensive and b) the idea of lying there while someone ELSE works seemed good at the time. Turns out that putting electricity through me, whether a nerve conduction test or to kill some hairs – both really punk me out. But with probable hospital stays ahead of me, what do I do? Get over it, accept that it, like so much else is now out of my control. Maybe. One woman I know who does shave daily (I had NO IDEA until she told me) said her greatest fear is getting into an auto accident and her husband has strict instructions to NOT rush to the hospital UNTIL he has gone home and gotten her shaving kit.

So that is me, I fart, I drool, I dribble on myself, I have issues with taking a dump, I have issues with peeing, my skin dies and peels off due to lack of oxygen, my toenails fall off because of lack of calcium and oxygen, my leg hair and other fine hairs have died for the same reasons. Lets see, what else? We covered my crown head hair going while more comes in on the lip and chin, we covered incontinence. Oh, I also experience “sundowners” which means I get a bit blue when the sun goes down, and I have emotional liability (rapid emotional changes). That means I cry, sometimes a lot, sometimes in odd places. You are not supposed to cry in an MRI, you are not supposed to cry while giving blood (but I did). Sobbing and hiccuping during the QUOTE routine procedures is seen as odd, you get the ‘face’ but the truth is that liability is part of my condition and even if it wasn’t, people get sad and cry, particularly when going to find out how much more their life, choices and options are limited. I expect that some people get angry and yell, I might have done that during medical tests or medico meetings once or twice. I seem to be stuck in a crying thing now and cry at least once a day. Is this why I am dehydrated?

What I am trying to say is that often conditions, disability conditions like CFS/ME, Lupus, Lymes, other Auto-immune disease, MS, cancer, and a lot of others have side effects into the “unspoken area” of bodily function. And if there WAS accommodation and acceptance then there would be more trying to understand and make a person feel UNashamed instead of the HR person saying to the person with irritable bowel, “We are giving you the desk nearest the bathroom because of……well… know.”

So apparently this blog post is about taboos, but if it is, it is about taboos that happen every day, from spasticity to facial dropsy (nothing as humiliating/amusing as getting a muscle spasm while serving in badminton and your birdie ending up a full court away LATERALLY - just have to laugh and say, “Um, that one got away from me….like 40 feet away from me.”)

I think I am lucky that my first experience with peeing myself was after a seizure at the pool. I was rag doll limp and that feeling like, um, lava rising came and there was NOTHING I could do and I whispered, “I think I am going to pee.” The lifeguard said, “No worries, that happens here ALL THE TIME.” And I thought, ‘true enough.’ Changed one of my most embarrassing moments to something that was almost ordinary.

My most embarrassing moment? Finally able to meet Linda’s co-workers at her Xmas dinner, only they decided to host it at an inaccessible house. Four men carried me in with female managers calling out instructions. Not subtle. They had three fireplaces going. The only table was the buffet table. That is where I had to eat. Linda had to cut up my food in front of her colleagues. Few to none would talk to her, but I could here them talking about me, the whole, “Did you see that?” and “Poor thing.” And “Like having a child.” As the heat built, my face started to dropsy, my speech became slurred. The very few people who tried to say hi to Linda she introduced to me; and got me trying very hard to be interesting and lively and instead I was slurring and un-understandable, spitting and hissing as my tongue was stuck to the right side of the mouth. Linda at several points had to wipe spittle or food off of my chin.

I will not forget my feelings amidst this group of people who were all about money and power and “up, up and up” and working for the government. I was not just the poor relation who arrived on someone else’s coattails but I feel deeply, like I felt no where else, from many of the people that if Linda has REALLY cared about me, she would not have brought me at all. I was not fit for ‘polite society’, I was not something…sorry, I mean someone who could not likely understand what was going on around her much less participate. That was my most humiliating moment.

If you don’t want to talk about what it is like biologically to be YOU, okay, but I have “bared all.” So if you will, I don’t care if you are able body and finding it takes you longer to pee and adjusting to that. Or if you are hitting menopause in a society where women in the workplace should be consistent and stable at all times (or not be there at all!). Do you have to take insulin, and have to sneak off for that, or other medication? Does your irritable bowel mean you know exactly how many minutes every toilet is from your house (I went through that!)? I guess what I am saying is that you don’t need to feel alone or ashamed, because I am learning NOT to be ashamed, because I AM disabled, and that doesn’t just mean using a wheelchair, it means a whole lot more. And here, if you want to talk, I don’t judge (hey, I am the one packing ANTICIPATING for peeing myself, to know I will drool on myself, I have hair on my face – but I WILL kill it, so either you can, like everyone else, turn away and pretend I never spoke at all or…share?).


cheryl g said...

Getting gas from a belly full of air. I know that one since it happens regularly with my CPap machine. I end up with a bloated tummy and all that air has to go somewhere. So it's fart and belch until most of the air is released.

My chin whiskers started coming in a few years ago. They showed up hand in hand with the hot flashes. Now my mustache is darkening. Of course if I decide to do drag it saves me gluing the fake one on.

I stopped shaving armpits and legs 15 years ago. It was too difficult to do with a fractured back and broken pelvis. At that point I decided that people would just have to deal with me as I am. If they found that uncomfortable then too bad.

We are all human and we all have biological changes happening. We fart, belch, drool and grow hair from places that society says should be hairless while losing hair from the places where it is acceptable to have it. My message to society as a whole would be - DEAL WITH IT!

Laura said...

This is an important issue. (hehehe) That is just the way life is. The very nature of the human body has been the subject for comedians for a long time. I am sure that we all have stories that we could tell. I know that I do.

I have long felt that some people take bodily functions way to seriously. Gas happens, wet farts happen, sometimes when we pee it runs down our butt, (for women anyway) sometimes when we sneeze or cough we leak a little. It really is no big deal, at least for me.

It is good for a few laughs at times though.


Perpetual Beginner said...

The medications I take for my whacked-out metabolism gave me an instant case of IBS. Since my training on bathrooms seems to be much like yours, it took me some time to learn to be matter-of-fact about it.

What struck me oddest about the whole thing is that I'm very blase about other people's biological functions/difficulties. I've talked about my friend A here (she has cerebral palsy). We became friends and I got my first PCA job in the same incident. We were both at the same college. As of the start of my senior year I had just moved into the dorm she lived in. Her period started, extra heavy, on a Sunday, when she had no scheduled help until Monday morning, and there was practically nobody in the dorm. So she checked out the entire floor - there were two occuppied rooms, me, and a pair of incoming freshmen. So she took a chance, knocked on my door, introduced herself and asked for help. So I helped her - took her to the bathroom, got her cleaned up and changed, got her messed-up clothes into the laundry, etc. etc.. As far as I was concerned it was just stuff. Women have menses; blood is messy; people with limited hand control sometimes need help with awkward messy stuff. No big deal.

So how can I be so matter-of-fact about other people's biological effects, and so very mortified that I have to deal with them too? I let a nurse get away with giving me a Tylenol, not even extra-strength, after abdominal surgery, because I was ashamed to admit I hurt that much. It took me months to adjust to my new IBS symptoms, even though they're mostly manageable and don't actually become public beyond excusing myself to go to the bathroom somewhat more urgently than I used to, and occassional gas. I don't give myself even a tenth the leeway or consideration I would give someone else. It's strange.

Perpetual Beginner said...

On urine collection, btw. Is there a reason that a hat won't work for you? (Plastic receptacle, fits over the toilet seat and catches all the urine, even if it's dripping off your butt.) They don't work for everybody, but A absolutely has to use one if she's doing urine collection. It simply won't work for her without a hat, but if she has one it's not that difficult.

Elizabeth McClung said...

Cheryl: thank you for talking about it. Since it is taboo, or taught taboo. Your joke about the mustache makes me wonder if like me it is easier to joke than scream or get mad at something uncontrollabe?

Fractured back and still tried to shave legs? I hope you were trying the Lotus position too!

Yes, I am working on the deal with it, I just haven't gotten there yet.

Laura: This is the way the body is. Which is why, even though I believe in God, I have to wonder, why make women's bladders so badly? Why sneeze and leak or laugh and leak?

Perpetual Beginner: Yeah, trying to find a perfect and empty bathroom is hard. With IBS, often I just wouldn't go out to dinner with people in case I got struck half way. Finding a probiotic that worked even for 4 or 6 hours allowed me choices again. Becuase I just couldn't handle...the humiliation? Where does that training come from? (oh no, here comes freud!)

Good story about your friend. Actually I will have a story about, um a mystery person called L. (forgive Linda for I am about to sin!), who after we moved in together, we did the romantic hot tubs and all that and she ended up with infected boils in a place that required sleeping on stomach. I could deal with that for her (though I think I said, "You are testing my depth of dedication early!" - so sensative....NOT!), and care for her and rub in cream and all that but for me, it would be a totally different thing. Is a totally different thing. I am still trying to mentally find the 'right' person to help me when the time comes for assisted showering me in Area 51 or other duties (like wiping). I know it is in my care plan but I can't imagine ever being so vulnerable. So I get it.

THANK YOU for telling me about the hat, will the medical labs know what that is becuase all I get offered are large dixie cups, and that isn't doing it (not to mention having some muscle strength and trembling issues).

Victor Kellar said...

I don't have anything very dramatic happening, just the vagaries of age. I accept hair growing in new places but why is it all growing in grey? And after I turned 40 I began to sweat more .. but only from the pit on my right side, like twice as much as the other. This became especially embarressing when I got a tattoo that requried me to remove my shirt, I'm sure the poor artist was swooning as the sweat poured down one side of me.

I've gotten hemroids a couple of times and for some reason I'm not even sure of, would only share this with my wife. Why is that? I'm a pretty open guy ... maybe it was the male sign of weakness thing, I'm not sure.

I hope Collette comments on this post, she could share a few things but I won't do that on her behalf, let's just say that she has had to, out of necessity, adjusted her own personal parameters of public "decency"

yanub said...

Farts? You want farts? Just insist on slipping some wheat or soy into my food, and you will be treated to an intestinal symphony and smell-o-rama that you won't soon forget, but wish you could. I'm generally constipated, so rarely do I worry about making a splash, as it were, in the ladies' room, and the noisy bowel is no indication that relief is in the offing.

About bladders--Ever since I squeezed Carapace out into the world, I have had stress incontinence. I once tried some of that medication that is supposed to help with stress incontinence. It didn't do anything for my bladder, but it sure relieved my constipation. If flowing, unstoppable bowel movements can be considered a relief. So, um, I'd rather wet myself.

Speaking of Carapace, she describes her problems with her prolapsing bowel at ( I'm pointing this out mostly because she wanted advice on hand cleaner, so if anyone has some, go give her some advice.

SharonMV said...

Hi Beth,

first of all, get the hat! When we first got the stuff for a24 hr urine collection, they gave us nothing to collect it in. Now not only did I know this would be impossible, but having had a 24 hr urine test during one of my hospitalizations, I had seen the hat. So hubby had to another lab & get the right equipment.

Because of my immune deficiency and also the constant use of antibiotics, I don't have the normal flora either. Also have bad bacteria overgrowth in the small intestines and GERD. So I have several issues there. Being home most of the time & various meds help ward off public difficulties. I've read that probiotics won't work for us (people with primary immune deficiencies). Have many nights of stomach discomfort, pain. And now I know why I have this hugely bloated abdomen (the small intestine thing). But that doesn't help me feel any better about how it looks.

I know we've talked about my hair before. I have lost lots of it several times. Grown most of it back a couple of times. I hate to think that I leave a trail of longish brown (and some grey) hairs, but seeing how much I find about the house, I'm sure I do. Now my hair is really wacky. It's been falling out but has also hasbecome extremely dry. Some parts are still curly, but some have gone almost straight.

I also have the fun of turning bright pink to red in public. My cheeks get really red from my Lupus rash. And sometimes I'll get red & blotchy all over from lupus & fevers. Most people don't say anything, but I've had a few people ask if I was alright or say "it's sure hot today" or some such comment. And when I have a fever I often sweat excessively, especially my face. I bet you would love to have that particular problem, Beth.

And of course there is the whole puffy face & weight gain thing from prednisone.


Anna said...

Yes....I've longed to have a reason to write about facial hair for along time....:) My condition/syndrome is not dangerous or anything it is just annoying...Like starting a beard at seventeen. At twenty, boys asked ME for advice on what razor they should buy.
What can I say, I hated it.. still do. It was so bad I've could have gone to the Vaudeville if my career hadn't worked out.

Well.... some of the experiences..of 15 year being the bearded lady....I tried almost everything to get rid of it, left me with a really bad skin, sometimes I looked like a pizza... And I recognise the tought, I hope I don't end up in hospital, or anywhere without my razor.

Comments heard:
Mum is that a man?
Are you in drag?
What IS IT?
Poor poor you...
Have you tried....? (Well meant I know, but I just got tired of getting suggestions I probably already tried.)

And people did ask me, and did ask my friends about it. Honestly! Facial hair should not be that big a deal?

Grownups seemed to be more relieved to be told it was a skin disease rather than a beard, because REALLY women don't have that.
Children on the other hand couldn't be fooled. If I said, it is a disease, the child said: "Nope, it's a beard."

A funny story, my best friends daughter, who seen me with bloody spots on my face since trying to remove facial hair with "gentle hair removal for sensitive skin" (result, broken skin but the hair stayed), had a discussion in school about men and beard. The teachers went "and who's got beard?" The children answered things like, dad, granddad, my neighbour, and my best friends daughter truthfully said, Anna.
Answer not accepted. Child in tears.

So, I never really liked having a beard. And since I didn't end up at the Vaudeville, I finally found a way to remove it. Love my skin, but could have travelled round the world for the money the treatment cost me.

desdemona said...

Well, I'm dark haired, I don't remember not having facial hair (I'm 32, so it must have started pretty early).

I am lactose intolerant.
My most embarrassing moment was at a birthday party of my then boyfriends friend. I hadn't eaten properly all day and he had a buffet set up with the most delicious pasta in cream and spinach sauce as one of the vegetarian dishes. I dug in. Half an hour later I was on the toilet. Hot flashes, blood pressure and pulse all over the place, feeling sick, diarrhea, the lot. I was in there for an eternity (about 30-45 minutes) and the bathroom was right next to the living room full of guests, of course everyone a) knew who was in the bathroom and b) how long I had been there. My boyfriend finally knocked politely and asked if I was ok. At the time I was debating calling for help and getting an ambulance or something... He helped me out and I went for some fresh air, then I was freezing and shivering and the poor host came to us and asked if he could do something (he was really very sweet and clearly very concerned) and we finally left, got a cab and went home where I crawled into bed and wanted to die.
I found out later that year that I'm lactose intolerant and now I can handle situations like that, but I still get lots of gas and diarrhea from lactose, and that stuff is in everything, so I have to watch really closely what I'm eating.

The crying? Yeah, that's a good one. I've been suffering from depression on and off for years and when I'm really depressed I can not stop crying I can not control when I start crying and man I can cry! About everything!

Also, childbirth, totally great experience in the "I don't care how many people are looking at my crotch anymore" department. And yes, pushing a baby out is pretty much the same as pushing out poop, so that happens at the same time. But really, at that point in time I couldn't have cared less. There was that head the size of a melon, I had other things to worry about than pooping ;-)
Oh yeah, embarrassment about flashing boobs? Not here anymore. I'm "still" breastfeeding my nearly 11 month old and of course I do that in public, she doesn't take the bottle and can't drink from a cup yet, so I can't really not let her nurse, also, when she's on my hip she holds on to me and usually that means one hand's on my top right above the boob and sometimes she pulls. "Hello Neighbor, yes, that's my left boob right there, let me adjust my top I'll be with you in a second..."

Also, again pregnancy related, Hemorrhoids! Yay. My midwife when I had my son joked "Have you named your other two children yet?" Seriously, the most painful experience in my life, every time I get them, and apparently it's the time of year for them, again, thankfully I'm not pregnant this time because the doc last time (emergency room on a Saturday because I could not sit/stand/lie anymore without being in _so much pain_) he looked at my butt for about 3 microseconds and then went on to do an ultrasound for half an hour and used half a bottle of that sticky gel stuff. I could have body surfed out of that room...

Lene Andersen said...

I love when you break taboos.

All the meds I've been on all my life have wrecked my stomach, so IBS, sure. Then I started the biologics for my arthritis and I thought I knew what it was like to have gas, but it turns out I had no idea. None. The farting's one thing, but I can now burp... no, belch like a champion. Once, I was on my way home from a restaurant with a few friends, opened my mouth to say something and out came one of the loudest belches I've ever produced. Out of nowhere. Echoing off the buildings around me.

I'm a lot less worried about unladylike things these days. People get gas, you can't hold on to something you don't have in your hands, so whatevs.

Tom P. said...

Yesterday was my nephew's engagement party so we took Mikey with us. Mikey has Down syndrome and autism and can act inappropriately at times, if you know what I mean. But almost everyone was great with him. There was one little boy that Mikey wanted to play with and his mother kept pulling him away but everyone else was totally accepting of him and most of these people we did not know (they were on the future bride's side of the family). I took him home to stay with his Nana because it was too hot for him (Mikey does poorly when it is too hot) and when I came back everyone was asking where he was.

I think there is one big difference. Because Mikey has Down syndrome he looks "different". I think people are more comfortable with that. Seeing someone like you makes people think, "God! That could be me!" I think for some people, seeing someone with a disability makes them think of their own mortality.

Carapace said...

"Squeezed out". Nice, Mom. Real delicate there.:p
So you can see how much of a taboo I didn't inherit about body stuff.
Which isn't to say I don't have
stories-( but they're a little long for comments.
I refuse to feel bad about getting physical assistance. I've been a care worker; it just wasn't that gross (tiresome, but not gross). Besides, you know who else gets waited on hand and foot? Royalty and rockstars. So I say enjoy the privy council, and try to be a benign despot.

Gaina said...

I think you'll find a lot of the time that people will act like nothing's happening because some are actually quite thoughtful and don't want to compound the embarrassment of having a seizure in a public place with the humiliation you might experience being stared at. Of course that's often not helpful, but it's how people think - kinda mis-placed sensitivity.

Me? I'm usually out of my chair trying to get the person in the recovery position while everyone who's of a useful height (ie not 5'0" like me!) is being 'polite and sensitive'(...HELLO! person 10 inches taller than me having a seizure over here - a little help wouldn't go amiss!? LOL).

Having the soles of your feet massaged deeply is great for getting your bowels moving - that and strong peppermint tea works every time for me :).

As for bodily functions, well I've never been coy about mine and that's why I have a lot of male friends - they just laugh when you crack a fart or belch. Because I'm little and have a very soft voice, I'm often asked 'How the HELL did that noise come out of such a cute little person?'. Haha.

With regard to the laser treatment for facial hair, it is apparently very expensive but works so well (ie no re-growth after one treatement, sometimes two) that it's worth the initial expense. Would the laser 'punk you out' too or is it just the electrolysis?

Whilst you're lamenting your farty, dropsy, dribbly, hairyness just remember that Linda happens to love you. And she took you to that party because you're the woman she loves and she's proud of you. If the other guests couldn't get over themselves and treat you like the intelligent, fascinating woman you are, then fuck 'em. Yes, I said it - fuck the lot of 'em.

This is what Clarissa Pinkola Estes calls 'Belly Goddess Humour'. And it's essential we don't lose it.

Tayi said...

I don't have any particularly interesting stories about loss of bowel control, but, like cheryl, I no longer shave my legs due to back/hip issues. I'm a really hairy person, too, so its a bit... unsettling to see my legs. I have a picture of me in shorts around here somewhere, I'll have to look for it.

Veralidaine said...

I am too young and able-bodied to have many really good stories of my own... but my mother is a woman who breaks hairy taboos. She has never shaved her legs or pits or plucked the couple of whiskers on her chin. It's not that she isn't a bit vain; she's very concerned about her weight, and any time I see her eating something that is NOT salad is a memorable time. I don't know quite what motivated her to choose not to shave, but she doesn't seem to see hair as a detraction from her beauty-- and she IS a very pretty woman, though not traditionally so, because she also never wears makeup, doesn't dye her greying hair, and usually is wearing stained jeans and t-shirts.

I was always horribly embarrassed by her as a teen. I started shaving before I even really had hair to shave, bikini and all, because I did NOT want anyone to be saying the same things about me as about my mother-- "Eww, look, her armpits, bushy! Her legs, it's like a forest!"

I still don't know why she's never shaved... but I gotta appreciate remembering how much she didn't CARE about all those comments, because now when maybe I have a prickly pit after deciding I didn't have time to shave yesterday, if mom can run around with a full-grown Tribble under her arm and not be bothered by rude comments, I can ignore any looks I get for a few bits of stubble.

I guess I do have ONE really embarrassing body fluid story. I got my first period the day before going away to overnight camp for the first (and only) time. Mother, bless her heart, got me the "junior" pads, because they wouldn't be uncomfortable in 12-year-old sized panties. Well, I apparently had preteen panties but adult menstruation, because on my first ever night at camp away from home, they soaked right through and I had to beg my cabin mate for a proper woman sized overnight maxi pad... which, even worse, HER mother had packed her "just in case" because despite being years older, my lucky cabin mate had NEVER had a period! So she was of course giggling and telling me how YOUNG I was.... urgh.

Elizabeth McClung said...

First off - I am probably a hypocrite but I still dislike people (GUYS!) who belch or fart in a manner to make it MORE and then look around with a facial expression as if they have accomplished something equivilant to uniting the states of Italy! Arg! Had one vacation ruined by staying next to these BOYS (they were 22 or so but acted like boys) who drank beer and belched, only two hotels over some other BOYS belched back, then it was a nightly contest of 2-3 hours of belches ripping through the night air as I am lying in bed muttering over and over, "I HATE men, hate men, I HATE men!" (not all men, but the ones next door I did).

Victor: I think aging can be pretty traumatic as well. I think having to look at ear-hair trimmers can be a "have I come to this?" experience (I know it would be for ME!).

The right side sweating is interesting because I think the artery goes by the left so I thought that would be the one to sweat more. Oh well, I know the feeling though since one of the FEW places on my entire body that sweats is my VAGINA. So after badminton, looks like I peed myself.

Thankfully avoided hemroids but have had doctors plain out ask if I have them, that irritated me. So I can understand the privacy thing. I too hope collette comments.

Yanub: Well, not really WANT farts but I understand. One of the problems about IBS I had was that going out to dinner, even when you don't HAVE to go, my intestines can make the noises of "coming attractions" loud enough to almost drown out a conversation.

Oh, darn about the incontenance, but it is what is, right?

I read the bowel one from Carapace and I am pretty sure that should be medical treated but since I don't know HOW exactly I am leaving it alone, have to admit don't have enough EXPERIENCE doing that to have a valid opinion.

SharonMV: Yes, when I first read the "hat" comment all I thought was "ewww, why would I want to pee into a baseball cap" before I figured it was medical thing.

Yeah, I hear you about the small intestine, becuase you can "accept it" but until Society changes it is still hard to accept and go, "Hey great, I have X, which makes me look like this!" I use Florastor as a probiotic which is what they use to combat diarriah from anti-biotics.

Losing hair sucks, there is not way to make that easy - there wouldn't be a multi-hundred billion dollar industry for guys if it didn't suck and for women who are EXPECTED to have hair, it sucks to see me, myself falling away from what I want to be, red haired with wild purple streaks, full hair behind me as I wheel downhill. Not the whispies.

Yes, well, I am glad I don't get red and I am glad I don't have Lupus (so sensative aren't I), though when my autonomic system gets tired I get fevers as well. I am almost used to my disability/illness so I don't know if I could adjust to yours, though dripping on my torso WOULD be useful. Though again, probably not high on the Miss Manners recommends.

Anna: I'm glad you are will to talk openly about it only.....YOU FAIL TO INCLUDE HOW YOU KILLED DEM HAIRS!

I was going to add in that COPD or other conditions create hair growth on the face for women (as does anorexia) but I assmed everyone knew that - the one that startled me was non-cancerous ovarian tumors do. Wha?

Thanks for telling this story becuase before writing this, the only time I heard it talked about was one minor lesbian magazine had an article, "My girlfriend has a beard" about facial hair and that was IT - didn't see it in COMSO, or REDBOOK.

Yes, our society is not very supportive of women with facial hair. And I am sorry that you had a lot of jerks and stares and so many years of unpleasantness. Also all the disappointments from trying this and that and not having them work. ARG! As you see at the start, even a few months in and I am going edgy with the "What, you know a treatment that works!"

Yeah, I can imagine the need to strange suggestion makers might have been strong at a time. I actually debated for a couple weeks ever to bring this up this how I want people to think of me, is this all they will think of me (yeah, know that I am insecure), I mean I have my picture up. People in town read this and know me and I am writing about this.

I agree, it shouldn't be a big deal, but it is, which is why I forced myself to include it, becuase it IS, it happens, and as bad as a hypocrite as I am, I am not going to give in to society about something that is outside of my control (even if I hate it and feel bad about it and all that crap).

The story about the child from best frien, I keep thinking about the teacher and how SHE probably was bleaching her mustache, but telling kids, "Oh no, woman don't have FACIAL hair!"

I am glad that you found a way to not have to have it anymore (now tell!). Thanks for talking about it openly. I think it helps me, and others and all those people who lurk or for the next couple months will search and find this blog and your comments and know that they aren't alone.

Desdemona: Yeah, for me the WORST thing is to leave a stink as a guest at someone's place - don't know where that drummed into me but that is it, so when IBS started I had a few times where I LITERALLY RAN OUT after leaving the bathroom because I could not face the person who invited me and was crying for being such a BAD PERSON. Linda had to make apologies and leave. So yeah, I can sympathize.

I don't get how crying a little is okay for women by CRYING like a lot starts to creep people out. Yeah, when I started crying at bread commercials or dog food commercials and sobbing going, "The....the....the...hungry.(SOB)...puppy" people were like edging away.

Thank you for all the stuff about childbirth and pooping and breasts becuase it is REAL and also all the stuff that NEVER shows up on ER or DR. HOUSE or Grey's Anatomy. Also of course the conversation with the neighbor made me laugh and laugh.

Oh god, you are NOT supposed to make hemmeroids and lube funny so much that I hurt from laughing, becuase it isn't funny but you write it so well. I feel bad for you, but I am laughing, does that make me evil?

Lene: Oh well, what's a few MORE taboos broken between friends

Of course, laughing about the belch becuase no matter how important the point or discussion about the break down of governmental ethics in European countries post cold war visa ve the black ops prisons....your point is somewhat missed when people are trying to understand your speaking over the sound of your own belch still ringing like church bells around the downtown of Toronto.

Well, I still TRY to hold it in becuase I have had a few times I was expecting SBD "silent but deadly" and ended up with 'high pitched noise of air escaping a ballon' for 10 seconds instead. Oh, where do I look, not at the people, study the wheels of my wheelchair very, very closely!

Elizabeth McClung said...

Tom P: Maybe, though I bet you must be tired of the "Downs children are God's angels on earth" kind of statements. But I am glad that he got acceptance and people to play with. And yes, I think because I am young and people knew me before sometimes, it is hard to accept in a town of seniors who JOG, that I am there, drooling - a total anti-statement of you can always be totally healthy and independant if you eat enough vitamins and exercise enough.

Carapace: That's okay, just get her back by introducing her to people as "This is my progenitor!"

While true, that royalty actually DID have people to wipe thier bum (and it was a highly coveted job because you LITERALLY had the ear of the king), I don't think the works who come will see me in QUITE the same light. But yes, much like in Buddism, if you are born, then you will die. If you want to live, you gotta each, which means, mess and farts and belches are gonna happen.

Gaina: Probably you are right, they are watching but trying not to so I don't FEEL bad, except I am at my most helpless and ALONE and drooling. Which I will say is actually better than when 4 guys decided to take over and you are lucky to escape without a broken limb or jaw.

For me it is Red Grapes, that is what makes the brown go down.

As for treatment, It seems that laser needs like 8 treatments because hair grows in cycles and so there are three cycles of 6 weeks or three months and if you don't zap EACH cycle a few times, then you miss a whole group. Dunno, apparently very scientific. Did actually try it, and now have a white spot on my chin where all the pigment (and I hope some hair) was burned out - I am sure it was just a bad tech, and not, as can happen sometimes if you have an odd skin mix, something that will regularly happen (apparently if you eat a lot of St. Johns Wort?).

I get what you are saying about the party. It just burns and humiliates me that the people Linda interacts with all day, THAT is how they think of me and THAT is the level of consideration they had (knew I was in a wheelchair, made no accomodation, lots of steps). Very different to friends.

Tayi: Yes, I am actually WANTING to wax because I can't stand looking at my legs anymore. But can't afford it right now. I guess these things fall under, stuff we deal with. Not happy about it, but can't change it, so have to live with it?

Veralidaine: Well, you may be young but LOOK AT ALL THE THINGS TO LOOK FORWARD TO!

Bikini and ALL? AS a child? Yeah, no issues about hair there. I understand the whole thing about hearing people diss our parents and wanting to be ANYTHING BUT like that though.

The menstration story, I was going, "Oh God! OH GOD!" I'm sorry, yeah, so much for subtle. But you know when you are in a public restroom and you don't want to open a pad becaue then EVERYONE can hear - hey, she's got her period - but you had it worse. So sorry.

I am a WEE disturbed by some women with COPD (ovarian cysts) as they get VERY delayed and irregular periods (like 1 a year), also with those getting the injection of the birth control. But when they say, "Oh yeah, I had my first period at 18" or "I think I might have been in college." - and I go, "Did you not think you MIGHT want to ask a doctor about that?"

But like girls in gymnastics can go until thier 20's and they leave gymnastics before thier first period (becuase without enough body fat you don't have one!). How did I get on this topic?

Anonymous said...

I defiantly can share in this discussion; I had IBS extremely bad for about 3 years. Ask Vic he knows were every bathroom is in the Toronto area. I had several accidents soiling my pants in several prominent Toronto locations. I got very good at cleaning up in public bathrooms. I learned to carried extra underwear and pants were ever I went. I often would have accidents as I tried to open the door to our house. I use to cry and become very upset but I just learned to carry what I needed to get through the day or the situation. I have hair issues as well; my Italian heritage has lead to some facial hair. I bleach it sometime but most times I deal with it. The kids at work sometimes notice it…my usual joke that they know they are getting older when they have more of a mustache that I do! This usually stops any further comment and also allows the girls an opportunity to talk about delicate issues. My mom shaved everyday when she was younger she hid this but as she got older she was very open about her hair and having to remove it before going it public…she even used my fathers electric raiser, it worked for her. I also have a problem asking for help, when I broke my arm (shattered my elbow and had to have a bolt put in) as I was waiting for surgery they casted my arm, I had floating bone chips which made movement quiet painful…with our sad medical system I was sent home to wait for a surgery date. Well I had difficulty performing difficult functions like bathing (Vic had to shower me and wash all areas) I had to ask him to help me off the toilet and then the final insult my period started. Vic being the a trouper offered to help change my tampon but I just couldn’t go there I to force myself to do it on my own nothing the painkillers could solve.The jore we talk about this stuff maybe the easier it will be when it happens to others.

Shea said...

Most embarrassing moment? I'm a closet eater. I diet and loose weight, then I gain it back. I can eat anyone I know under a table, bit not when they are around. That would be okay I guess if I was okay with it, but I am not. Once in high school I had a baby sitting job.I had come off mayo clinic diet. The lady cooked dinner and left it in the fridge for her hubby. I ate the whole meatloaf and a couple pounds of mashed potatoes, green beans too. Maybe this seems like no big deal to some. But try being the one who sneaks up to the kitchen at the office to eat a 4th and 5th donut. I couldn't let anyone know so I gobble it down fast and make sure I drink something and there are no crumbs left on my mouth. I do all of this enormous amount of eating until I gain twenty five pounds then either starve, do diet pills, or atkins. It stays off for a while then all over again. I wish I could be THAT person. You know, the one that looks at food and says, "I'd love to have a piece of cake". I'd love to eat and think it was good and move on. Instead, I am the person who thinks, "Why can't I eat 5 pieces of cake, why can't I eat the whole thing". It consumes me at times. I get to the point I hate food. I hate that I have no self control.

Neil said...

Ah, burps; they happen, so don't panic. But why do teens have to make a big production of them? Our younger two take great delight in shaking the dust off the light fixtures with their belching. A sort of trumpet voluntary. Disgusting things, children...

I have a bladder that doesn't travel well. I need to stop every 60-90 minutes for a bathroom break. My kids are going to love me, since we're going on a 500 km jaunt soon.

At least the nurses in the colonoscopy dept were honest about the air that is used to inflate the work site: "You'll lie on your left side for the procedure, and stay on your left side when you come back to your room, 'cause that's the way the wind blows." And blow it does. 'T'ain't nuttin to do but let fly. Gets rid of the bloated feeling, and helps things go back to normal. And maybe, just maybe, if the doctor left something behind, it'll get blown out. :)

"I feel a change in the wind, says I."

Hugs, and rude bodily noises, but quiet ones,

Perpetual Beginner said...

Oh - COPD. I just had the strangest talk with the pituitary specialist about COPD. Apparently I ought to have it. I had the late start period (17), insulin-resistence, etc., etc.. So she was asking me about my fertility history, plainly expecting to hear about fertility problems, and got "Er...I've had sex without contraception twice in my life. That's the two boys in the waiting room!" So, not so much on the fertility problems.

SharonMV said...

Hi Beth,

I was just saying that you would like to have the ability to sweat,even if it was at times excessive, not the other symptoms. I'd never be able to endure what you go through. I guess I'm used to my illnesses, though I'd like to go awhile without getting any more.


Tammy said...

Oh yeah. I have numerous "issues". I have peed my pants in public on several occasions. I have bladder issues. Not too long ago, I was trying to unlock the door, with a bag of groceries in one hand, and needed to pee. I did...right down my leg into my tennis shoes. That is a gross feeling. Then I had to throw everything in the washer. It is just a horrible feeling to be squishing around in your tennis shoes. I laugh about it, what else can you do?
I also have IBS. Put some red meat in me and just watch the freak show. I always joke that I haven't had a solid shit in 3 years. Oh the joys! I am often late for work because of it, but I just don't care. Thank goodness I have a very understanding work place.
Hair? Oh, don't get me started on that. I think I have the hairiest toes on any woman. Then there is the facial hair. I bleach, shave, pluck. You name it. Hell, I even have to pluck nose hairs. Do I find it embarrassing? Yep. Do I try to hide it? Yep. I think that for women, it is such a perceived unfeminine thing to have, that is why we don't talk about it. There are some cultures who find hairy women very sexy though, so perhaps it's just a societal thing?

Tom said...

Victor - I had to laugh about hair growing in new, strange places. I'm just a few months from 50 and I definitely have that issue. Fortunately my wife is a saint and she voluntarily trims the hair growing on my ears. At least I'm not one of those guys whose hair moves from the top of his head to ears. ;)

Lisa Corriveau said...!

em said...

Oh I adore you for writing this. It's one of my big rants because No One wants to cop to being biologically based. It's perfect really because we can use the shame based rules to feel superior to our peers. A fabulous feeling.

I am developing a uterine prolapse of some sort. It's a lot easier to poop when I apply pressure to my labia while I'm doing it. Sometimes I pee when I sneeze too. I cheerfully mention when I sneeze and pee most of the time because I'm hoping to hack society a little. I'll be the topic of dinner conversation "this woman today just right out and said that she peed when she sneezed. I would never admit that. But you know, I do actually pee when I sneeze. And she looked like she wan't even ashamed. Hmm. That must feel better than this secrecy."

That's what I'm hoping for, anyway.

Donimo said...

What makes a taboo? Location, location, location. It's so interesting how we get boxed into looking and behaving certain ways. I'm thankful for my queer community and the differences that are celebrated. I am female and have very hairy legs, but that's cool in queersville, and so is my femmy friend with facial hair. But when I go to doctor and put on that gown, I am very aware of my hirsute status. I'm also thankful for being a part of the disability community because I've been to gatherings, performances and festivals where there are a lot of folks who drool a bit, or exclaim at odd moments or who move differently and it's all so bloody "normal" and okay. Would that it could be that way everywhere.

Anna said...

Ok. The magical word for me was IPL or Laser. At the Beauty Salon. Kills the hair, but if you have hormonalimbalance the hair can come back in new places in the face. I'm not sure if this is a good websitw but just to give you an idea what it is.

Well, as I said this is it FOR ME. And I would recommend to go to a salon, or clinic (rigth word?)and to make sure that they are "good". If the treatment isn't done the right way you could end upp with burns, skindamage, scars and pain.
For example if they fail to instruct you not to be in the sun some weeks before and after a session you can get bad scars.

A good clinic asks you about any conditions you have, or medications.They told me that because of my hormones they couldn't guarantie results.

There are machines for home use, but I wouldn't dare to use them. Anybody who has?

This works best with dark hair on pale(bright? feel free to edit my english:))skin.

The treatment to me felt like putting a lighter to your skin for half a seccond. Repeat that sensation for about 15 miutes. Then redness and sensitivity for a day. No staying in the sun.

And I'm sorry, but don't you think something like this would trigger new and strange symptoms for you?

Elizabeth McClung said...

Collette: what you wrote is really important for just those reason, so that we CAN talk about it, so others will be able to. Ironically I had my own 12 second calling to the bathroom tonight for the first time in longer than I can remember (so could be months, or longer).

It seems unfair, unjust that if more prominant doctors and world leaders had IBS, I think a cure would be found. I would cry, I have cried. I'm glad you wrote your story; I don't have pity, only caring and some understanding. The way you deal with the kids; I'll have to steal that.

The story about the elbow and the period resonated with me because it never seems to be just one, or that once the part is reached where I have been pushed beyond coping, there is just one more humiliation placed on top. Why? Why is it so hard some times? I would have done the same and I don't know any clever answer about how we should change culture except; sigh, and it sucks.

Shea: my greatest fear with food also used to be a loss of control, that is why I would rather starve until my hair fell out, becuase if I "let myself go" I would eat and never stop. So while I don't understand exactly, Linda has seen me lose control and eat and entire box of oreos, maybe more, after months of anorexia and then be so sick, I want to throw up, maybe I do. She says that part of me scared her, the extremes. Thank you for sharing. Please don't be ashamed, I'm glad you shared, and I feel less alone. I wish I could hug you, and we could make some deal to be there for each other.

Neil: good luck on that trip, I remember our family trips used to be photos of the 40 odd rest stops we stopped at. You would think we lived at rest stops. Or maybe that was just when we remember to take a picture. Rest stops of the west coast, rest stops of the praries! Why isn't there book? A guide?

Perpetual Beginner: um, yeah, didn't seem to stop your eggs flowing so not a big deal. Linda's GP when we moved looked at her (big build, facial fuzz) and took her off the pill sent her to be tested for COPD. They should have asked me, I mean, when she isn't on the pill she has TWO periods a month (I love the pill! Give her back the pill!). Too much random hormone fights for no reason.

SharonMV: I don't know how you deal with what you have and you think the same of me, so we agree not to switch for now! But maybe, like for a vacation - I just don't know how you can be, "Oh, I have another fever, or another cold." I would be counting them, making chisel marks of my rage on the wall.

Tammy: about peeing yourself, you said it, if you are alone you laugh about it because there is nothing else to do (like screaming and cursing). Seriously, shouldn't body function be under control, but of course they aren't, not all the time. I worry that I won't just have a seizure and pee but with a really full bladder (With retention that could be like 1.5 litres), so I imagine myself lying there as this puddle spreads and spread and spreads and the look on everyone's faces. It is like a nightmare, but also a "future attractions" if you know what I mean.

I do know one woman who refers to her feet as "hobbit feet" but I found that so odd, not the hair, but that she is so blaise about it. PLEASE TELL ME THIS COUNTRY where hairy women are beloved! Sorry, I hope it is true, I do think we in the west are a little obsessed with barbie. And hiding as women when we don't fit the perfect image (but if 40% of women HAVE to clear facial hair regularly, then it is almost a MAJORITY that don't fit even THAT aspect of the perfect image).

Tom: er....nice wife. I think this is a bonding thing with Victor so I will leave you to it.

Lisa: I played it in Java, it was very interesting. I tried making sentences different directions. "Hello Kitty goth farts"

Em: you bio rebel you! I am glad you have been fighting the fight and saying it, even if it taken in silence. I am bio and personally I think feminism and disability movements should accept and embrace the bio. Maybe they are. I hope so.

Donimo: I agree that I wish it were that way everywhere. I wish people would roll with it, instead of being embarress FOR you so much you finally become embarressed.

Yeah, medico country seems very straight, or oreintated as 'this is norm' - and when you can't shave your legs, and you are bleeding out of your nose, and you are in the gown. Not norm. feeling conscious.

Thanks, great comment.

Anna: thanks - the staying out of the sun is NOT a problem for me right now but as you say, that kind of trauma when I have autoimmune anemia (let's be optimistic!), would probably mean things going wonky for some time. And as you point out, no sure thing for hormones or the next thing that might go wrong.

But still, might work for me, might work for others. Don't think I will do it now. Dunno, I have electro on prescription so I can get tax credit. Can I get laser on prescription I wonder? I wouldn't have to worry about other people seeing the red face. Thanks. I will let Linda look - see seems to be the one who says, "Are you nuts, have you forgotten......."

Anonymous said...

I haven't had to deal with most of the stuff people here have described, but I know I will - at least some of it - when I get older.

The bidet and washlet, once a source of terror, became a fountain of relief right after my appendectomy. As I gradually went off a liquid diet that week in the hospital, the food they fed me was loaded with fiber, so things were...messy. My only other option would have been to neurotically use up half a roll of toilet paper because I could only get sponge baths for a few days and EWW MUST GET CLEAN. Not to mention that just moving around to wipe was painful since all they gave me after the anesthesia wore off was an NSAID!

Also, I found out today that fake soiled underwear can be used as a theft deterrent. (Hint to Shomer-Tec shoppers: cocoa powder or Taco Bell are cheaper!)

I'm fairly hairy, but I've never shaved, except my armpits, and only in really hot weather. I had a cool doctor when I was a teenager, and she once said during my physical, "Good for you. There's really no reason to shave your legs." (I wish all doctors were like her.) That held me even during the Christmases when my mother gave me passive-aggressive gifts like electric razors. I'm glad I was never fat, or I know I'd have gotten 'helpful' diet books and Weight Watchers gift certificates.

The sad thing is, I think a lot of younger women have started shaving their forearms, too. The only women I see anymore with hair on their arms are middle-aged and older.


Anna said...

Hi again, about laser....
Yeh, It doesn't have to be Linda. If you allow me I can say it. If you have a serious condition you have to be CRAZY doing laser. Which includes intense heat and pain:(

I couldn't get prescription for my laser, but for electrolysis (? right word?)


elizabeth said...

Sharing time.

When I was on vacation with Spartan - I have no idea why... we were having a wonderful time and I was really happy and all of a sudden tears just started pouring down my cheeks. Couldn't speak. Poor Spartan thought I'd likely lost my mind. I guess I kind of did...

My one friend's theory is that I've been storing them up to find a safe place to let them go - and poor Spartan's chest was it.

Oh yeah - and part way through I accidentally dropped a fart. It could have cleared a stadium. I was mortified - which only made me cry harder.

In the end he just lay there with me stroking my hair and telling me to let it out - but not the farts anymore if I could help it--He couldn't figure out how something he thought was so cute could make something quite like that. It made me laugh despite myself and I eventually fell asleep.

One of those moments... ;-)

Neil said...

Oh, I forgot to mention that my hair is thinning on top, and sliding down to my back. And as my back gets more hair, the hair tickles and itches... So my wonderful wife is incredibly patient when I ask her to scratch the bits of my back that I can't reach.

A good back scratch is heavenly!


Raccoon said...


I'm paralyzed from the shoulders down. I use catheters to pee, and suppositories for my bowel movements.

When I was first getting used to my SCI, and my new body, accidents happened on a regular basis. I was at a Ren Faire, a year and a half later. I was wearing an external catheter and a diaper. Somehow the external became detached -- we discovered this halfway through the day. And nowhere to go to change... At the end of the day, we found a table to lift me on to to change me. Diapers can hold a lot of liquid; it looked like someone had taken a bucket of water and thrown it on the table...

It's embarrassing to be in that type of situation. Not so much being wet, but being around people who only know you as the person before the injury/illness. They know you is the person to come to for assistance, never you as the person needing help yourself.

Elizabeth McClung said...

yakiikaonastick - horaay, thanks for commenting. I think of you often!

Yes, I missed the soft toilet paper over there, so I know what you mean. Also with IBS, you can go through a 12 pack in like less than two days so either a little blood after a while or a bidet.

An electric razor is "passive agressive" - I say that is DOWNRIGHT agressive! That sounds like a cool doctor, wish I had her. I hadn't noticed the upper arm thing but now you mention it, yeah, that makes sense - it is a barbie world - sigh.

elizabeth: Great, I am glad that you could let that all out - you must have had a lot of storing up of emotions and found a safe space to let it Sorry, I couldn't resist. I am glad you cried it out. But also glad you introduced Spartan to the fact that females DO actually have biology, and some of it is messy (and or noisy!).

Neil: Too much INFO! I mean, I just keep thinking a Balo the bear in Jungle story when you say that, when he rubbed against a branch going, "OHHHHHH YEAHHHHH!"

Raccoon: Thanks for telling the story. I am at the point now of retention that I think cathaterization is not that far away (three trickles in a hour keeping me from sleeping!), but then, have enough nerves died in there yet - oh well the para society magazine has MANY ads for self cathaterizing.

The ren faire - lift you on a table? That's the best. Darn, that is not exactly, um, subtle. And yeah, it must have been hard in many ways to see the people who knew you in other ways. Stuff like that is when people walk away and say, "Now I know she/he is SICK" or "Different" or "won't be the same." Geez, the chair didn't tell you that?

I'm not sorry that I met you (on-line) - but do I wish that we could all have those lives back, the ones were we were the people helping, with the knowledge we have now - hell yeah! All I know is that losing parts, emotionally, physically, grieving, it all hurts - at least for me. So I think I understand, in some ways. If you have the solution...let me know.

saraarts said...

Well, okay. I left you a little tale about being a prosthetic leg user and also having to using an automatically flushing toilet hygenically over at my place, but while we are on the subject, how 'bout a little chat about stool softeners?

When I had brain surgery, they gave me stool softeners through my IV and then also sent me home with some in pill form so that I wouldn't have to strain and maybe pop a staple. It seemed odd to me at the time, because I can't remember the last time I used the scalp muscles behind my left ear to take a crap, but my logic and language circuits had gone temporarily awry, and also I was constipated from fear and menstruation and, oh yeah, advancing abdominal cancers I didn't even know about in detail yet, and I'd never taken stool softeners before, so I didn't resist.

Big mistake.

You may recall that at this time my prosthetic leg did not fit me very well. The socket shoved itself into my various nether orifices at every step, all of them. Stool softeners gave me rectal leakage, leakage of which I was wholly unaware until faced with the evidence.

Paint your own picture.

Fortunately, prosthetic limb sockets tend to be highly washable. However, even though approximately 6% of the general population are amputees -- not sure how many of those are transfemoral amputees, but still -- no health care worker thought of this in advance of dosing me up with a substance that ultimately made me -ahem- unwittingly lose control in a most unhygienic way, and for no genuinely logical reason when you consider where my staples were.

I agree that these kinds of considerations could use more open discussion, if only to educate health care workers and facility designers about realistic consequences of specific choices for their less-than-100%-able-bodied customers.

desdemona said...

Well, looking back it all was kinds funny, especially the lube and the hemorrhoids. I mean, he takes a look "Yep, them's hemorrhoids. Let's do an ultrasound." and I'm usually not shy around doctors anymore, but I didn't even think to ask him why he thinks he needs to see if the baby is doing ok even though _I'm_ the one having the problem, at the "other exit"... On the other hand, I got to see the baby and she was trying to make it up to me by "baring all" seriously, spreading her legs and confirming that yes, this is a girl, if it comes out a boy we have a biological miracle.

Dawn Allenbach said...

Oh, the things I could write on this topic! I'll have to do my own entry at RHR to answer you.