Labeling vitamins.Labeling vitamins!
My new rheumy — so far, very pleased — agreed that nausea caused by Plaquenil doesn’t help me. I didn’t even have to explain it, he told me to stop taking them right away and to increase my MTX. This means I need to get new pre-pared syringes.

This makes the MTX basically the only ‘real’ medication I still take, apart from the occasional naproxen or paracetamol (Tylenol).

I do take a decent load of vitamins in a medicinal way, not taking them causes plenty of issues, and they may interact with each-other / other meds so I always count them as medication.

My last blood-test showed a deficiency of vitamin D, ferritine, low B12. Still waiting for the vitamin B1.

Currently I take:

MTX
once per week, as injection, for the RA
folic acid
once per week, to counteract the side-effects of MTX
vitamin B12
once per month injection due to inability to absorb
vitamin D
as cod liver oil, twice per day, also comes with vitamin A, and as tiny tablets, four per day, for ‘senior citizens’ which just have D in them
multi-vitamins
also for ‘senior citizens’ which has extra vitamin B1, iron and zinc, twice per day
calcium
twice per day, with extra vitamin K and D

Mixing and matching turns into another juggling game because too many of certain vitamins (A) and minerals (iron and zinc) poison my liver, and my liver has a hard time dealing with all the other poison already, so I don’t want to push that ;)

My body needs lots of fine-tuning.

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Mashed potatoes.At around 1.5 years after surgery I still haven’t got the hang of that eating thing. This annoys me.

And when something annoys me, I go fix it.

So, the food-plan! I’ve probably said it before and tried it before, but I’ll just do it all again, because one of these days it’ll stick.

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Cleaning supplies.On August 15 of this year, I had my birthday. I spent it mostly ill (in bed), as I did most of the other days at HAR2009. Not what I had in mind.
I’ve spent most of the days since also mostly ill, either in bed or on the sofa.

It started with tendinitis in my neck, on the right side. Then it went to the left side. Then I had it in both sides. Then my shoulders, my elbows, my thumbs. My knees and feet and recently, my right hip. Mostly not all at the same time, it switches. Just as I think it has gone, it starts somewhere else. I’ve had tendinitis before, and know that the best way to get rid of it means a lot of rest and also a good dose of anti-inflammatories. I’ve taken a lot of rest. But not so many anti-inflammatories. See, they have this nasty habit of irritating your stomach and intestines, and as I don’t have the stomach anymore, my intestines get the full blow. This makes it harder to eat. So for the past 2.5 weeks I’ve juggled with the tendinitis and the rest and the pills and the eating. It slowly seems to improve, very slowly.

One of the contributing factors of my recurring tendinitis, my RA, will hopefully improve somewhat soon. I have started methotrexate injections (no more pills because they, you guessed it, cause gastro-intestinal problems) which should prove more effective and help with my pains. Other factors however, don’t have such an easy solution.

Stress plays a major role and unfortunately, I’ve had a lot of it. I’ve had appointments with my podiatrist for insoles, my RA-nurse for learning how to inject methotrexate and had to go to the pharmacy to get all the stuff. Also had to go buy groceries (a girl’s gotta eat), make at least part of my flat ‘injection-ready’ (the methotrexate requires a bit more care than the B12 injections) and eat. And eating hasn’t really gone well lately, so I had to spend extra time and extra care with the eating. Buying groceries doesn’t help with the tendinitis if I do it in bulk, so I had to do it in bits, which adds more to the stress.

Currently, I have a full-time job taking care of myself and doing all the necessary health related things, and not much, if any, energy left for other things, like say, socializing or ‘fun stuff’. I have tried hard to keep up with what others expected from me, and have found that despite their attempts to understand and to deal with what I go through, they really can’t if I keep on trying to keep up with them. I spend a lot of energy doing (or trying to do) what I think I should do, what I think others expect from me (or what they have expressed) and what I think I can do. But what I think I can do doesn’t equal what I can (and stay sane and relatively healthy). What I think I can do already lies above what I really can do.
I spend lots of time reacting to things that happen, trying to make the best of them, trying to keep up, trying to appear normal.

No more, I say! I will not spend my precious little amount of energy feeling lived and not actually living.
No more reacting, time to act on my own.
No more trying to keep up, if I can’t, I can’t, suck it up! Don’t try and ‘encourage’ me, please.
No more pushing myself to eat things I know that don’t work (hello, bread), because they make me feel like crap later on.
No more not having control over my life, my self, my sanity. I will not do it anymore.

I’ve grabbed my copy of Getting Things Done by David Allen and I will re-read it to see if I can tweak my system to help me out more with my health-related stuff and possibly the eating.
Eating takes up about 90% of my energy (no, not kidding, totally serious unfortunately) and I need to get a better grip on it.
I need to think the other things through, before I go out and do them. Yes, this means more planning and less spontaneity, a small price to pay for actually getting more healthy and getting a bit more sane. It may seem (too?) neurotic to most, for me it comes down to a way to survive and actually start living my life again. I’d very much enjoy that.

I wish I could also say ‘No more pain!’, however, I don’t have that much control over my RA. I will do what I can to ease that pain, and wait patiently for that cure, but not holding my breath in the meantime ;)

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Metro.AmsterdamAmsterdamMore from today's tripMore from today's tripWaiting for metro


I went to visit my podiatrist for the first time, after my rheumatologist referred me, due to ongoing pains in my toes despite lack of arthritis (actual inflammations). I had to take of my shoes and walk around a bit, and she did some pushing and pulling and feeling in general.

At one point I had to press up and down against her arm with my feet, which didn’t go very well. I have a lot less strength in my feet than I should, to the point where she expected me to trip over my own feet almost constantly. I don’t because I pay a lot of attention to how I walk so I don’t trip (which in turn eats up lots of energy too). She suggested getting a good physiotherapist and luckily for me I already go a referral for that yesterday. In the end, it turns out I have inflamed nerves and I’ll get inlays to help relax my feet a bit so the pain goes away (a little). She made it clear that it won’t do miracles, and I chose to go ahead with it anyway.

It appears we got my RA under control, and I have all these side-things that make me hurt anyway. Heads you win, tails I lose…

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My RA started acting up with the rain, so I decided to take naproxen twice daily until it calmed down (which seems like the best solution so far, even though it gives me tummy-aches). Usually I stick to one naproxen, but it got so bad this time that I decided to suck it up and take two.

And I’ve had so many weird dreams since I started them. I still blame the plaquenil, as that caused weird dreams when I started it, however, the naproxen seems to have a part in it too. I have no doubt the medication causes these dreams, as an interesting side-effect. Sure beats the cramps and nausea…

A few nights ago I dreamt I witnessed the disappearance of my father (that in itself doesn’t really fit) on an ice island near the North Pole where I tried to fight of pink slimy monsters that came to invade my house from the other side of the island, by following the barb-wire on the edge of the island (near the icy cold water) that we used as phone lines.
Last night I dreamt I got caught up in a robbery and had to follow the bad guys with as many cold coins in my pockets as I could carry and then getting locked up in a boat.

I’ve had weird dreams all my life, but these recent ones really top the rest. Extremely vivid, and even though it would normally turn into a nightmare, I remain calm in the dream (and afterwards) and basically go with the flow. I just wake up with this huge WTF-feeling.

Maybe I’ll start writing them down, they’re pretty cool really :-)

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10 days post-opYesterday the hospital kicked me out and my mother took me in ;)
I’ll stay with my parents for a while and took a 10-day-after-surgery photo to show off my scar.

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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.

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  • 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 :)

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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.

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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!

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