Thursday, August 07, 2008

What Must be Done.

My medical condition is unique. But then, I have found many people with Lupus or CFS/M.E. or MS or other conditions also have unique presentations, even cancer can/often is unique. Which while it seems that there would be little on this blog for people to connect with because my condition is different, often in posts like “What are you afraid of..” or “Deliberately doing something stupid”, or “Which schoolgirl/boy are you?” it turns out that we have a lot in common, or a lot that I enjoy hearing about, experiences I recognize or like learning about.

So on this blog are the parts which people can’t relate to (hey, nightly nosebleeds used to be “icky” to me, now it is, “same old”), and that parts we can (like my unhealthy obsession with Hello Kitty which makes most drug addictions look cheap by comparison!).

I want to talk about some of the things that over the last while I have learned to face, learned that they ‘must be done.’ Which I think everyone from babysitters facing a child with projectile vomiting, to fathers and mothers and other people with chronic conditions we all have. These things that “must be done.”

First I’m not supposed to talk about doctors and medical or Beacon because it is late and night and I am not oxidizing and stress with fatigue and lack of oxygen are all recognized indicators for seizures. So to distract myself I say I did send another three post cards today and worked on a couple more “surprises.”

Plus Linda has the Toaster on hold in Port Angeles and the owner is getting the sleeps et for me. So thanks to the readers here who convinced Linda that she really SHOULD get that toaster (good job).

It seems that our toaster over has a broken “toast” button so she has been doing her toast on “broil” every day for over two years…making do. So thanks, this will soon be ours!

Okay, back on topic! Now there are a lot of things that are changed, are different and annoying; like how I now have to stop and check my temp and my hydration, have to listen to my body instead of just ordering around and dealing with the consequences later. That’s not what I’m talking about. Getting old isn’t either. Being on oxygen isn’t. But making up a sign for Linda so that when I am in public and have a seizure I can indicate that I am drooling, and she can mop it up in front of everyone. That is something that just has to be done. Just like when I have a fever becuase I am so fatigued I can't control my body, my heart is erratic, my body not oxydizing and I roll up (or are pushed) to a 30 minute boxing class becuase if I want to be better has to be done.

Telling people that I have brain damage is a "has to be done." There isn’t an easy way and since if I initiate the conversation there is almost no way of knowing means that isn’t easy. To tell a scheduler, “You’ll need to talk to Linda, she has medical power of attorney because I have brain damage, and because I won’t likely recognize people you send, even if they know me.” It has to be done, but it isn’t fun, it isn’t easy. Like explaining why you don’t know the person who knew you for a year and is talking to you like an old friend; it is usually shortened to, “Sorry, I had a partial stroke and I have brain damage.” Always a great opener at parties (that’s a joke, who would invite me to a party? Hint! I’m open most nights!).

Blood Test and other needles, that has to be done. With the sedatives it means I lose almost a whole day (suck!) but it has to be done (I don't sleep great the night before either!). And these days it needs to be done a LOT. And no matter what level you think you can’t take, they just keep raising it. I remember in the UK they used to take ONE vial of blood. When I was first sick they took THREE, then SIX, then one time TEN. After that it was fourteen, another ten, and now, they just took twenty-one vials of blood, with additional blood tests in two hours.

Okay, Area 51 time! I used to have a scarring from an abcess which oozed white blood cells…it was a WAYS into the vagina. The abcess started created scarring. The gyno, who was old school I found out later (like Civil WAR old school) decided to use silver nitrate to make the scarred flesh fall off and try a clean re-growth. Silver Nitrate kills flesh starting with your top nerve endings and then sort of works in for 12 hours. Turns out, they don’t use it anymore (the gyno over here did a biopsy and a laser extraction). But back in the UK, this was a teaching hospital, which meant that I am there, legs in air, feet in stirrups, 60 year old dude staring down my bits. And behind him, was at least one other person who looked about 25 having 'training'. Then he starts applying the silver nitrate (which look like those sparkler firework sticks). Which results in a bit of screaming. At the end, I thank him (I mean, he is doing his job right?). Then starting about 40 minute later the cramps come, and come, and come and I have to shower and douse, or douse over the toilet and see the brown, black, purple and green dead and dying flesh come out. Back to cramps, rinse and repeat for 12 hours, then another day of the 'oozes.' That was every two weeks. He said, “That scarring sure seems resistant.” My gyno here says he was basically putting a bandaid on the problem (a very painful bandaid). Ha, so there, my Area 51 story.

I don’t expect people have the same experience but I expect you have your own experience of “Had to be done.”

For me, what freaks me out is the term, “Needs to be rebroken.” Just seems both morally and somehow otherwise wrong to take a limb and then RE break it. Always gives me the shivers.

Okay, one more example and that is about urine (a fav subject). Right now, in my wheelchair emerg pack along with my oxygen, my ice break packs, my emergency phone (for 911), my emergency taxi money is my emergency underwear. We go someplace, we take emergency underwear AND jogger bottoms. Why? Two reasons. As of a couple weeks ago, the loss of feeling in my legs, thighs has reached the point where I cannot tell whether I am peeing or not. And with retention, that means I can be dripping and dribbling for ages and I’m basically down there with a flashlight trying to find out, “Am I done?” I have to listen for the sound of stream but then, it dies, but suddenly, when I'm halfway outta there, it comes back to life. Hello, bladder, can you please give me a LITTLE notice? Plus with the seizures, among losing arm control, or limb control you can get the bladder doorway stuck in the OPEN where it is broadcasting, “Hey, all ready to pee!” – and the fact you are lying there going, “Shut up, I’m paralyzed and NOT ready!” is ignored.

So it is just one of those things, those things that has to be faced and dealt with, because either I can feel humiliated and squish around (hey the wheelchair cushion is waterproof!). Or I can be assisted to cleaning up and start again. I chose that if an accident happens, I am going for the latter.

So, now I am off to another of those things that they keep wanting me to do…sleep. See we are having a giant heat wave here (super, super hot today - where they give the numbers of people who died the day before in the paper, that kind of hot) and my nap left me nauseous and paralyzed – basically in heat exhaustion. So going to bed, if it is like last night, with the pain and the waking, not fun. But again. It is something that has to be done. And I expect as things continue, much as life continues for everyone, I will face more and more things that ‘must be done’ (I can’t imagine they would want even MORE blood vials in one go – that last one was three pages of tests long).

And just to get the sharing started, I will give one word which “must be…” for a goodly portion of the population, one word, so full of dread, yet such familiarity…..Pap


yanub said...

I remember the first time I realized that something unpleasant must be done, and it must be done by me. I was a teenager, my parents were at work, and I and all my siblings were home with stomach flu. And not everyone was able to get to the toilet or a bucket in time. So, a hallway full of vomit, me sick too, but someone had to clean things up and I was the oldest. That's when I knew that growing up was doing what must be done, whether or not you even felt capable of doing it.

"Needs to be rebroken" is a horror that Carapace and I faced every night when she was wearing reverse headgear. Dear child, how long was that? One year? It seemed like forever that I had to turn the key on that palate spreader. I suppose it was worth it, since, even though the results haven't been perfect, she has so far been able to go with reconstruction surgery on her jaws. And she wore that gear faithfully every night and day, daring anyone to tease her over it; she was so eager for her jaws to align.

Anna said...

Shit.... seems to be my favourite word. Any synonyms in english.
Shit I couldn't face all that you write about. A never could. I rather die...... Well it is not so simple is it. I find it so hard to adjust. I would never ever cope with that......or. The truth is I don't know.

I have a problem, don't know what it is. Happens a few times a year. In the beginning I thought it would kill me. Its having extreme pain in stomach, back, throwing up and you know diarroea, emptying everything in just a few minutes. The first time I panicked. Now I learned to sort of do it and then pass out on the bathroom floor until I'm recovered.

I'll suppose thats what makes humanity survive, that we learn how to deal with things that first seems unbearable.

A friend got a friend how sort of got his life back, after beeing ill and "maybe" dying. To live normally, as if having a life seemed as hard as the prevoius alternative.

Writing this at work fast so I hope it makes sense. Buying some child postcards for you:)

Lene Andersen said...

"And no matter what level you think you can’t take, they just keep raising it."

Sometimes, "they" is the disability. I find that just when I've gotten used to (sorta) a new level of inability, it raises the ante again, giving me something new to adapt to. I never thought I'd be able to be remotely happy while at my current level and then I got there and found out you live around it. You adapt. After you verbally abuse the gods for a while. And then you bargain "I'll suck this up, but no more, ok? Just don't make it worse". And then it gets worse and it all starts over again.

Sorry. I beleive I went on a major sidetrack there. ;)

Tammy said...

It seems like there are dozens of things a day that "must be done" but I do. From my morning stretches to get my muscles moving, to arguing with my kids over homework, to fixing dinner for my family when I am so tired from working all day that I feel like passing out, to staying up later than I should so that I can get my husbands work uniforms washed. We do things because we have to, or for the people we love. There is a special kind of hell called a mammogram that "must be done" to protect our health. Giving birth to children exposes women to a whole new kind of "must be dones". Taking meds that I know will make me feel even more tired, just so I can deal with the pain, is a must be done. Grounding my son for inappropriate behavior, is a thing I hate to do, but must be done. Combing out the hair of my extremely tender headed daughter, with her in tears and me close to tears, but she looks like she is wearing a mop, is a painful "must be done".

It seems like with any relationship, or health issues, there is a slew of "must be dones". Many of them, I wish there were ways around them.

Lisa Harney said...

I'm always the first one to call 911. It seems like - when something happens - everyone sort of goes into as state of processing the moment and not reacting, and I've somehow managed to bypass that moment and make the call.

This is a must be done thing because of course it must be done - the call has to be made, and the sooner the better. The other reason is I hate talking on the phone - I have social anxiety issues, and one of them is that I hate dealing with people over the phone.

And a one-shot thing that had to be done, but I wasn't the one to make the decision, nor did anyone tell me because I was like 8 at the time - someone stuck a pencil in my leg as I was walking past them while in school. In those days, pencil lead was a bit more toxic than it is now, and this lead to a massive infection in my leg, making it difficult to walk anywhere.

So they took me to the doctor to lance it. They didn't tell me what "lancing" meant, and they didn't give me any kind of pain medication beforehand. My only memory is sheets of blood all over my leg and I'm screaming bloody murder. Plus, pain that I can only imagine because brains don't like to remember pain fully.

Neil said...

I had a hernia operation in my 30s. That's why I left Purolator Courier. The surgeon was very good, but when I went back for the last check of his handiwork, he asked if the doctor with him could observe, as She was training. What could I say? So I had to drop the drawers and let both of them check the area by eye and touch. Awkward for me, and maybe for her, but she had to learn to do that with tact, so I said yes.

The colonoscopy was another, um, tender issue; female nurses with invasive (male) doctor and roto-rooter tools. They were surprisingly dsicrete about it, though. Uncover the back and fold the sheet over the front, and it was not too bad.

Childbirth is something where the lady gets NO privacy whatsoever. My Beloved's first labour was all night long, and she needed me to help her in the bathroom. That was embarrassing for her.

Mammograms are supposed to be not the most fun a girl can have on a given day; I've heard that some women go in groups and cheer each other on. can't imagine guys doing that...

Zen hugs, and lots of love,

abi said...

The hardest thing that I have done was visiting my boyfriend's dad while he was dying in hospital, knowing that he could vomit at any time. I was frightened. I was also rather useless as a comforter for other people; luckily, they comforted each other. I repeated my uselessness on several occasions, and very nearly did my best (I could have done with removing the anxious expression from my face, and sitting a bit closer).

I've had broken bones, too, but the only time I needed broken bones moved around to be re-set, they put me under general anesthetic first, which was nice of them.

Thinking of this makes me feel very fortunate so far - my life has been rather charmed, really.

Actually, the biggest hell I can remember is finishing coursework on time whilst also holding down a job. The knowledge that there is so much left to do within a limited time frame, and that I won't be sleeping properly until it is done, does not improve matters.

All in all, I feel slightly embarrassed that my life is so easy, and has contained so little real unpleasantness. I pray that it stays that way, that I marry someone who never vomits, and that my children are as considerate as this imaginary spouse (perhaps they are also imaginary). The boyfriend's really not bad in this respect, but I'd prefer perfection ;-)

Perpetual Beginner said...

My first major lesson in "must be done" was when I was twelve and visiting my grandmother. Two days before I was supposed to go home, we were in a car accident and grandma had a major leg injury, but not quite major enough for hospitalization. So for two weeks, until my aunt could get there, I cooked, cleaned, changed bandages, and otherwise coped with what had to be done, since grandma couldn't leave her upstairs bedroom/sitting room.

I'm still world-class at getting blood out of sheets.

When I got to college I was astounded at the number of fellow students who still thought they could run away from a crisis and depend on someone else to deal with it.

cheryl g. said...

Must be done...

The yearly pap, the yearly mammogram, the x-rays and density scans every 5 years...

The one it has taken awhile to come to terms with is the idea of taking the cane or a walking stick everywhere I go.

As an EMT the must be done of dealing with body fluids and waste not my own is old hat. The most disconcerting was delivering a baby. It is astonishing how much fluids are involved.

Veralidaine said...

Hmm "must be done..."

Well, let's see. There was my appendectomy when I was 12, and for some reason (I don't remember the medical justification; I was 12, sick, and terrified) to do the MRI (or was it a CAT scan?) of my abdomen to see if I had an inflamed appendix, they had to put a balloon up my butt and inflate it a little bit.

Now, there's a problem with that.

I'm terrified of balloons. I'm much better now, but at that age.... AAAAAAAAAAAAAAAA!!!!!

I have to go now, I need a cup of coffee so I don't have a little freakout session and run around the office screaming thinking about that experience. I handled it, dealt with it, I was ok, but I wish I would have asked for a sedative now, because I don't like that I remember the experience!

FridaWrites said...

Veralidaine, I'm emembering that SouthPark episode where Cartman's back end gets invaded by aliens.

I'm avoiding what must be done today--haven't changed out of PJs or showered because of pain, which is better but not good, or maybe it's just the pain medicines. But I will, shortly.

I've been avoiding talking to my husband about the Area 51 issues and what's needed even though that eventually has to be done because I don't want to deal with it (surgery). Only one major medical trauma a year (max!) is my rule if I can help it. I'm having to take changes of clothes with me and avoid being out if I can. I get away with it some because I can sit down in public.

I'm surprised about how many "must be done" issues I've been able to deal with that I'd rather not.

Anna said...

Hi, Anna again.... thought of my comment at work. Felt bad, because I couldn't make up my mind whether it was offensive or not.... Hope it wasn't. It's just that my level of "can not take when it comes to disease" is very low. Or at least I think so.....

Elizabeth McClung said...

Yanub: Yup, the bio stuff is always icky. I feel bad thinking back on a car trip where all of us were food poisoning and the car stopped every 20 miles so someone could vomit in the desert. My brother had vomited into the car so many times (and been cleaned up so many times), that when at night, I mentioned while my father drove I felt nausous, he immediately pulled over, pull me out and held me upside down my ankles yelling, "Vomit, Vomit!"

I was just telling him I was feeling a bit car sick? But I guess after two days of vomiting from my brother and mother and him and cleaning up vomit he sort of snapped.

Your story about Carapace and the headgear made Linda and I cringe but I am glad it had a happy ending. OW.

Anna: Yeah, I don't have that, but I used to get something a few times a year like that except I never passed out (I prayed to, but I never did!).

I think you are saying after all the medical stuff having normal life again might seem strange, I think that could be true.

Part II: your comment was honest, so I wasn't offended. When I started getting sick I talked openly to Linda about the line at which "I would rather die, than keep living that way." Well, I passed that line and found that hey, life isn't great but I was more afraid of what I didn't know than what that kind of life actually is. And that needing to have someone pull down your pants to pee REALLY isn't worth killing yourself over, drooling REALLY isn't worth killing yourself over, being hooked up to machines or having speech and memories problems, if you have supportive people around isn't fun, but it isn't worth killing yourself either. I hope in writing everyday that people understand that some days AREN'T fun, and some days ARE, but that it is still life, and they may not understand how exactly I live it but if I can do it, I am sure they can too.

Lene: No, not really a sidetrack at all, as I had so much pain this morning I had to wait until my home care came to open my drink so I could have a pain pill, it was that bad, I had the shakes, I couldn't move. But I'm still here. So yeah, I still haven't accepted this as 'normal' or even doable long term but hopefully with some meds, it will be. Which is what I think you are talking about for yourself?

Tammy: Thank you, I wondered often, "How does she do it?" And now I know. It just is done. And yeah, family and marriage and all that takes work, and with an illness it seems to take more, but it is worth it, but it does take a lot of "just doing it" moments.

Lisa: Interesting you should mention that becuase Linda and I end up organizing people in different emergencies/disasters too.

I also have a phone phobia so I understand how difficult must be but yes, must be done.

Um, yes, actually it was probably better you DIDN'T know regarding lancing since any sane person would have run away.

Neil: Well, with the training thing, I did once decide I was going to take my entire university class since we were studying organzational structions and how they pass on culture values so I would be there at my gyno with 11 people behind me going, "This is a training treatment for me so I hope you don't mind if my students observe your medical and social skill set while you continue - that way, I had my students and he had his students. True, it was sort of revenging thinking but by that time I figured once you have your legs in the air and are screaming, does it MATTER how many more are there?

The way everyone is talking up mammograms, I can hardly wait. Though I contend that unlike Linda who has DD and thus might have hidden lumps all I HAVE are two lumps (no, no itty bitty titty issues here!).

Abi: I think a lot, like most people have problems with hospitals becuase it ISN'T a normal setting, I tend to overcompensate and be very talkative to cover my tension but I am just as anxious.

I would hardly say that if you had bones that had to be reset under anesthetic you had a charmed life, as I have, up till recently NO broken bones! I know people with no cavities and no broken bones - that's a charmed life. Admitted I have been in hospital but that was usually for hitting a snow making machine while coming down a slope at some insane speed so....I deserved that.

Ah yes, the working and classes thing can be hell, or working at night knowing you HAVE to go to work in the morning and knowing you HAVE to finish this before you can sleep and knowing you will feel like shite all tomorrow but you still have to keep on and work on the academia - ack!

I think if you are planning to have kids, there will be MUCH "what must be done" - but that is just having kids, from pregnacy to diapers to them getting sick all the time (see kids don't realize that if you eat over a pound of icing off the cake, that your stomach might hurt later!)

Perpetual Beginner: That is a VERY useful skill, about the getting out blood.

I think I was 13 or 14 when my church started putting me on Pallative Visits - yum! Yeah, stuff has to be done. I do have to say changing bandages freaks me just in case things have gone VERY wrong, like got soaked and was holding in the water, that last reveal of the bandage always makes me do tightening of the gut.

Cheryl: yea, accepting mortality is annoying in the extreme! And I was complaining yesterday how if all the talk of cervical cancer has been in the last five years or so - why and what have they been doing paps for all this time? More mammogram fun - the squish test?

Veralidaine: Oh, that seems like double cruelty - not only the operation but it is like saying if you are scared of clowns, "And as a special treat, this clown will be doing your prep!"

Yes, actually the amount of times I should have demanded sedatives surprises me - but now I just carry my own.

Shea said...

Got one for you. After my last child, I had an iud. Somewhere in the middle of the 5 years it stays in, I lost the string. What I "think" happened was the whole thing got flipped upside down, and no, I don't do acrobatics in bed. You have no idea the jokes I hear when I tell about the iud to friends. Anyway, the doc wanted to take it out at the surgical center under light sedation cuz it was so far up there. Together we chose to give me 10 mg of valium, a shot of tordol, and a mepergan and instead do it in the office. I have a very high pain thresh hold, and fear of hospitals(some nurse I am), so it was fine by me. Long story short. Meds don't really work on me. I was not relaxed a bit. After trying for a while and me almost screaming, out came the roto rooter tool, and she got it out after DIGGING. It was the most painful procedure I ever had done. I could not go through that again. It hurt so very much. I hear they leave the strings longer these days, don't know what they do when they flip upside down though.

Lisa Moon said...

Hi, you don't know me, but I'm about to share a lovely, too much info kind of story for your... uh, entertainment?!

Anyway, since developing this evil disorder called Complex Regional Pain Syndrome (which makes it sound much more pleasant than it really is), I've begun to take regular, opiod-derived pain medications.

Anyone who has ever had cause to take these, whether it's Tylenol 3s or Percocet or whatever, knows all too well that their most frequent and rather nasty side-effect is consitpation. Sometimes VERY SEVERE constipation.

Which they REALLY should warn you about more carefully, since those drug info sheets always have the long list of side effects, most of which you will not experience.

So, I start taking these meds, eager for the pain to diminish... and I find out that for me, this side effect is a given.

In fact, if I take fast-acting pain killers in addition to my regular, time-released one... well, the results are apparently exponential.

Like, what happens if you're so constipated that you simply canNOT go? Answer: you get to do something called manual extraction. That's right, if your poop's the size of a soft ball (but not soft at all) you can't go - so you can go to the hospital where they can remove the poop manually... or you can do what I did, which was to do this myself.

Let me pause to allow that to sink in. Picking out your own poops=painful, disgusting and must be done.

End of embarrassing story for today. I've another which involves poop AND vomit! Fun times!

Raccoon said...

For me? Bladder and bowel control both require "insertions." At least I'm not using diapers anymore.

Pressure sores -- you must stay off of them! Lie on your front if necessary! For as long as it takes!

For me, being fed. It has to be that way, but sometimes it's very embarrassing...

Lisa Harney said...

I couldn't have run away from the lancing. I could barely walk.

You're probably right that not being told was for the best, but I've carried that trauma for 30 years.

Other must be done: Helping care for my grandmother while she was dying. Having to help her into bed, out of bed, helping her use the commode because she couldn't make it to the bathroom. Helping move people around is not easy work.

Maggie said...

For me, it was when they reattached my finger. We had been out on a call and come back to shore. I reached down and in the process of tying up the boat it pushed forward and caught my hand and specifically a finger between the boat and bulkhead. At first it stung and my first thought was, "well, I'm gonna loose a fingernail over that one." Except when I looked down, it was just a bit of a different picture.

For the sake of some, I will leave out the middle of the story, but the funny rural medicine part of this story is that we had to locate the DR. and wait for him to find someone to watch the kids before he could come into the clinic. Once he got there, after closely examining my situation in all earnestness he says "I think I can fix it." Today I have a finger but we call it the dead finger because it doesn't have a lot of feeling or temperature regulation.

em said...

Once when my friend Val was dying they changed the portacath even though she was two days away from death. At the time I thought it had to be done, and I could hardly stand it that she had to go through it, and I sang to her, CSN's Teach Your Children because it was the only thing I could think of and it wasn't good enough, but it was something. Later I was mad that I let them do it.

Right now, leaving Bob must be done. I can barely stand it either. That is a clue to how maturely I handle situations that must be done. (I don't.) I whine and whine.

Dawn Allenbach said...

What must be done (the tip of the iceberg):

Take Mucinex twice a day because the humidity has my asthmatic body producing thick, globby mucus by the bucketful in my lungs AND sinuses -- mucus I must swallow because I have not the thoracic muscle strength to cough and/or blow it completely out.

Deal with the ever progressing weakness in my arms, no matter how much I wish to feed yourself without propping them on something first.

Deal with a back that's bent on (no pun intended) folding me in half backwards in the lumbar region.

Deal with weird and confused sensory signals from my ass and crotch (I believe due to squished nerves from abovementioned lumbar sway) -- a surface numbness of the medial parts of my butt cheeks (including the anus) and my entire vaginal area, but retained pain sensation that is amplified enough that sometimes wiping me in a particular way hurts and having a catheter inserted feels like I'm being impaled on a Claymore.

chris and rusty said...

We know all to well.....PhD in Peeology,past LPN,(ER and home health and hospitals and nursing home)Christine has been doing her part as T-10/T-11 incomplete paraplegic for over 22 years. Sometimes "what must be done" tears my heart out.I hate to leave her at a hospital. The only time I sleep is when she is home. Some people wouldn't understandThey wanted to amputate her leg from a failed muscleflap. We--WE-- said no and worked closing a 5 inch x 5 inch to the hip socket deep wound old school style over a 4 year period. Dakins solution packed every 12 hours. Thanks for all you write. Chris and Rusty Vancouver Washington