geekery, drawing and then some
When I woke up from surgery, about half an hour after they sewed me up again, I felt nauseous. They gave me an injection of something which helped a little, though I did stay nauseous all the time in the hospital.
I have an anecdote there: I got this medication that didn't help so much, so one of the nurses (bless her) switched me to something else, and that worked great. This after exclaiming:
But this stuff relaxes your stomach! You don't have that anymore, I will give you something else.
The stuff I got after that worked great. The next time they wanted to give me that other stuff again, but I protested heavily and I got the other stuff again. They also turned down the epidural (took away one of the opiates) to help with the nausea.
It never went away completely.
Now that I've removed certain foods from my diet (wheat-products and milk) and have stopped taking the Plaquenil I have a lot less nausea. It hasn't gone away completely (yet), however, it has gone away a lot. Instead of mostly nauseous with some nausea-free hours, the reverse happens most of the time. I only have the last week or two to look at, so I won't yet do a little victory dance. It looks good, though, and that makes me happy.
Today Nano and I walked to our default swimming-spot. She does the swimming, I just stand on the side. It got pretty warm so I sat on the grass as she hopped into the water and dragged herself to the mud. On our way home she rolled around on the grass and in more mud, which resulted in a trip to the bathroom after we came home. She did not enjoy that much, however, napping on the balcony in the sunshine seemed to make up for it.
While sitting in the grass I thought about Michael's post about routines. Like Michael I have worked on a drawing routine and routines in general. My life in general got pretty thrown upside down with the surgery and I still feel I haven't quite got my life back in order. Ever since surgery everything revolves around food and eating, or as my boyfriend recently said 'You're either preparing food, or trying to get and keep it in.'. I had little choice but to just do exactly that, as part of recovery. I make food, I eat, I drink, and I try to do things around that. Any type of routine I have, revolves around food.
Recently I've had this itch. I want to do more and especially do more drawing. Despite having a bit of trouble getting it into my daily routine, I want to, I have to do more drawing, more creative stuff. I want to get back to that situation where my schedule and routines don't revolve around food and eating, but the eating becomes a part of the routine itself, without being the routine itself. I do try to make food-preparation as creative as possible, by trying new recipes and making a nice lunch for the days I go to work. But it's still about food and eating. I need working routines, I'd love some inspiring rituals and I want some meaningful purpose in my life.
I need more than just food.
Today I read a blogpost by Priscilla Gilman that hit home. I feel pretty exhausted today, which may explain why I cried, but it's not just that. The same thing happened when I read Michael Nobbs' Beany (#1, 2 and 3). On page 13 of #1 Michael writes about that story with the frog in cold water, slowly heating it up so the frog doesn't notice it gets boiled alive. I had used the same example only days before, and he then wrote about his life getting smaller and smaller. I cried there too.
I've been ill for much longer than I've had my diagnosis. About two years ago I got the rheumatoid arthritis diagnosis. A little over a year ago I learned about my genetic defect, resulting in the removal of my stomach. Six months ago, after they took it out, I learned I already had cancer in my stomach (I had it taken out as a prevention, damnit). Yesterday I learned that my terrible attacks of pain in my big toes probably mean I also have gout. Tomorrow my doctor will call me with some bloodtest-results, because I just keep feeling so bad. The never ending fatigue has to come from somewhere, as does the hairloss, the flaky skin, the fuzzy head, the insomnia. Most easily shove it towards 'stress' or 'mental issues', but I don't buy that.
Most days I feel I'm running on sheer willpower, not human energy.
And it's getting harder to summon up that will.
And people keep on telling me I look great...
I've missed eating pizza since surgery. I did, a few times, but it only went well if I ate take-away pizza from one of those pizza places, not the kind I can buy in the supermarket. I could only eat 2 or 3 slices, and it seems a bit expensive to order in and only eat 1/4 of the pizza. It has to do with the dough, although I don't know the details of why it doesn't go well. Can't eat bread either, same problem. I get really ill.
Today I made a most excellent discovery. Gordita's (small, thicker tortilla wraps) work really well as a pizza-bottom. I tossed on some tomato sauce, chopped up veggies and mushrooms, added shredded cheese and popped the whole thing in the oven for 15 minutes.
Best pizza I ever had.
So I made another one just now. Two pizza's in one day. I like to spoil myself.
Yesterdday I got the all clear for 'clear liquids', today I go the all clear for 'everything'.
If all goes well I get to go home tomorrow.
- water went fine
- lemonade went fine
- apple juice went fine
- veggie stock went fine
Ofcourse, I don't know for sure until a couple of hours from now. But it sure tasted good :)
I had no further photos and tests today, the pain had subsided enough for the doctors to conclude that their biggest worry (I had sprung a leak) did in fact, not happen. We don't know the exact source of the pain, but suspect it just got caused by the whole surgery thing. They pulled out my intestines completely and then stuffed them back, this will hurt in multiple places eventually. The epi apparently hid it very well.
To make sure I've healed well, they'll have a contrast-photo taken this friday after which I can start eating again (provided it did indeed heal). My sister, who had her chats in her hospital today, told me they don't do the photo in the other hospital. Not all leaks show up on the photo and they want to prevent wrong-diagnosis. Personally I think you can just keep the info of 'it doesn't always show' in the back of your mind, but maybe they lost the key to the backdoor, you never know.
This morning the catheter finally got removed (piece of cake) and due to my IV breaking again (clogging up) they removed that temporarily and unhooked me from the feeding-tube. And then... I could shower! I washed my hair and cleaning the wound with water. I have ripped a little skin at the bottom, probably due to the vomiting due to the nose-tube and such. I noticed the area burning a bit the days before. It looks all good now, still swollen. My whole abdomen seems very swollen in general, but this will go away in while.
Apart from the recurring nausea, I feel pretty good. The painmeds work and last night I got a sleeping pill, slept a few hours in a row. Today I walked around the 'block' (the floor) a bit, and it went fine. Very tired afterwards though.
I'll try to post an update tomorrow or friday again, in general, in all looks really good.
Hey there; Grimm again for today. Sorry about not leaving an update again yesterday evening but after a visit at the hospital, the shopping, the dog-walking (dog-jogging, 9km's of it, really) and then watering the plants in between stuffing a pizza down my throat; things got a bit late and hectic. Then, when I meant to catch up this morning, it turns out that Tanja'd already gotten her EeePC out into the open and taken matters into her own hands.
However, as the title suggests, yes, she's offline a bit again; and voluntarily (gasp!) aswell. The truth of it is that it's more of a practical nature than anything else: tomorrow she'll be having a few exams and photographs taken to determine the function of her digestive tracts and such which will leave her belongings un-attended for at least a large part of the day. Now, apparently, of all the stuff in her bedside drawers so far, her EeePC getting stolen by hospital goblins is her most acute concern. It's so pretty and shiny and ... ... my precioussssss...
cough erm; well, in any case; I'll be keeping it safely here at home for the moment until returning it to her tomorrow , safe and sound (I promise!... No, really !).
So far on the hi-tech side of things; the bio-tech side of things seems to be progessing aswel, though not without a few side-effects. The epidural had been turned off and with an NaCL flushing of the system , things seemed to be safe enough to remove it entirely. Things were allright up to a few hours later when she started having side-pains that she can't really identify with anything in particular (yet). On another note; she's identified which of the many different anti-nauseousness medications seems to actually work and has gotten the resident nurse to supply that kind again (though not without difficulty - it really feels at times that without doctor-prescriptions and regular fresh batteries stuck inside them they have no autonomous functions in them whatsoever.. though , to be fair, there's a number of 'cluefull' exceptions, I'm sure. Darn, I didnt mean to have a period right in the middle of a parenthesized comment which is now becoming so long that it really warrants having been made into it's own sentence in the first place.. Just by continuing to type I of course am just making the problem worse so here it is.. ).
There, made it into the next paragraph. So, to continue the story: she hopes to be finding out what might be giving her those side-pains sooner, rather than later. They might be connected with the light pneumonia that she's been diagnosed with earlier and from what she told me her mother told her (still with me?), a side-pain that high up seems to correspond with pains that a pneumonia can be the cause of. It seems (though i forgot to actually ask) that her fever hasnt been bothering her as much as it did earlier or might even have subsided; as she didnt look as tired as before even tough she said she hadn't slept much over the last two days. And then there's the fact that at least one rather unhandy piece of tubing will be removed somewhere tomorrow aswel which should improve both her comfort and her mobility quite a bit.
Well, that's it for now. Expect some more tomorrow; perhaps even by the lady herself! Till then; keep commenting!
Hi all, thanks for the kind comments!
Saturday I started having pretty bad pains in my stomach and after I started to cry, the male nurse gave me a shot of morphine (see, crying works!). It improved a lot after that. Sunday I felt mostly nauseas from the tube in my nose. It caused all kinds of problems with coughing and such. I did not sleep much that night, mostly lay on my side, trying to puke (which did not work, and that hurts even not right after surgery) They removed the tube monday-morning, and my nausea has improved significantly since then. I still have some, but blame that on the actual cutting up part of the surgery. I've got a tube in my stomach to feed me and I don't feel hungry at all. This friday (they said thursday at first, but no room for me :( ) they will do a contrast photo of my insides to make sure everything healed properly. After that, I can start eating and drinking again. I get fluids through the IV as well as antibiotics, due to a mild pneumonia I seem to have gotten. The antibiotics will serve a dual purpose! Today the epidural will come out, and maybe today but more likely tomorrow, the catheter will follow. As we can't really prevent a UTI due to catheter, I like that I already get antibiotics :)
Right now I can have little bits of ice-cubes to wet my mouth and have little candies to suck on so my throat keeps working well.
I already feel much better than this weekend (I can get in and out of bed on my own, I can walk around a bit), and hopefully, removing the epi will not make me worse again :)
Anyway, time to clean up. See you later!
Righto; first of all, apologies to the people who actually DID leave comments here but didnt have them appear on the blog. Me with my less-than-useful knowledge of Wordpress and other things involving the 'blogosphere' didnt notice that I (the/an admin) need to approve comments before they'll appear here.
As such, I'll transfer the greetings and such that have been left there and, yes, this is Grimm behind the keyboard.
Having cleared that up emberassed cough, let me fill in the situation on sunday. She appears a bit more awake and a tad less tired than on saturday. Still a little bit of fever but she was at least ready for the idea of being able to watch television from her bed. She's been helped out of the bed to sit on a bedside chair for a bit and she now has her NaCl, Glucose, epidural and liquid food now on one of those snazzy mobile rolling posts to get herself around the place. I expect she'll be helped out of bed again today; more about that later today.
She'll be happy to get some info from the london.pm crowd, I'm sure ! Again my apologies for my weak blog-fu.
Just checked in with Tanja; she's just had other guests over and she was a bit tired out so I suggested I'd retire to the hospital lobby and give her a bit of a rest for a while before I'd come back.
She seems to be doing better than yesterday at least in the sense that she has a bit more color back on her face and seems less encumbered by the tube fed through her nose. On the other hand, she's had a pain grow in her stomach-area that caused her quite a bit of discomfort aswell as a fever, earlier in the day. I'm no doctor, but she doesnt seem to be having a temperature at the moment, at least so whatever she did and the nurses helped her do, she seems to be doing it right.
I'll be back in her room in a bit; gonna water the little bonsai I put in the windowsill for her; apart from the trees outside there doesnt seem to be much to look at in that place. Right now, however, lack of scenery seems to be the last thing on her mind (i'm guessing that when patients declare they're bored it's at least part of an indication they're healthy enough to find too few things to do.)
Just came back from the hospital after having had a call from the hospital earlier in the day about the 'outcome', so to speak, of the operation. The phone-call revealed that she was doing fine and was in the 'recovery'-ward with no obvious/known complications having popped up after the removal of her stomach. In fact, she was even able to ask for the phone to get to speak to me. Obviously, it was good to hear her 'up and about', even though it was also pretty clear she was feeling a bit woozy and sleepy (still) at that time.
Just now, during afternoon visiting hours, she was still sleepy and restless in the way that laying in one fixed position , in one spot, in one bed, will quickly make you. That is to say, even without the tubes sticking out from several sides and an epidural, having to lay in bed while you're not 'feeling so hot' will make you feel the classic 'Meh'-kind of way.
Her mother was there also and also obviously happy to see all went as well as can be expected, really. I didnt ask about any prognosis about hospital-stay-time or anything, since I'm sure it's too early to tell, but they don't seem to be particularly concerned or worried about anything so far and I'm sure that even though part of that is a valued professional skill (for a nurse), the bottomline is that she's on her way to going without those tubes and be able to get out of the bed and get around the place a bit.
I'll be there again tomorrow; in case there's anything people want me to tell/ask/etc with/to/for her , please leave a comment on this post and I'll try and do what I can.
Sitting on the edge of a bed that didnt turn out to be as soft as feared; it seems that UMTS actually does work here after all. Now it's just a matter of not letting the ward-nurses hear incessant typing noises coming from the room.
There's old people here; all over ! Two in the same room even. One's a soccer-lover, even though he doesnt seem willing to admit it despite the orange fedora hanging from a pin on the wall behind his bed. It's obvious the russians got him.
Right across from Tanja's bed there's a lady who seems to be mostly quiet and who most likely is wondering what the hell we're up to with all the typing and secret chuckles.
One of the nurses (if I can call him that) gave a rundown of what to expect the coming 24 hours; he's an interesting bloke who had to restrain himself from rolling his eyes into the back of his head when we mentioned we did a bit of googling and wikipedia-ing about medical stuffs on the interweb. He was, however so kind as to direct us to some places where , and I quote, 'one doesnt have to take the offered information with a large....large amount of salt'.
Anyway; the basic scheme of things , really, is that she'll be having a shower early tomorrow morning so the surgeons will be recieving her in the op-room smelling all minty-fresh and from then on things will mostly be an as interesting as a rollercoaster in the dark... , well; apart from the fact she won't even be awake for it , either. A few hours later and , presto!, one stomach, one girl; two different places.
Allright, so basically, it's really mostly up to the surgeons now; not too much to do, prepare for or think about. Tomorrow she'll wake up and there'll be a number of uncomfortable tube-stuffs , sensors, thingamabobs and bums-dings attached to her that'll keep check of her temperature, blood-pressure, shoe-size and bank-account, among other things. It'll be a while before she'll be able to come online to blog so I'll be trying to fill in the gaps for her until then. More soon!