On September 8, 2014 I went to make myself some tea and while pouring the steaming hot water in a cup, the lid fell off the kettle and released a cloud off steam. My fingers – holding the handle – got the biggest blow. I immediately released the kettle – or rather, I threw it, onto my kitchen scale which promptly broke. After cooling the hand for an hour it still caused a lot of pain. At this point I decided that a visit to the GP sounded really good.

My doctor took one look at my hand and said “Ok, let’s wrap that up and I’ll give you some morphine.” She used some kind of cream that helped with the pain and cooling, and then wrapped up my fingers separately, then the hand. The pills helped a lot with the pain.

Initially, I didn’t get any blisters, which sounded really good. On day 3 and 4, however, they started to appear on three fingers. I visited the GP office nearly every day for the rest of the week to have the fingers checked, just in case. It went pretty well, after the blisters decreased in size, and on Saturday I took the last painkiller. On Monday I went back for a last checkup, and could stop using the cream and bandages.

On Thursday the skin broke and started scraping off. It looked more uncomfortable and painful than it felt. Thoroughly impressed by the healing powers of my fingers.

I’ve trained a lot over the past months and I have finished up the official part of my physical therapy. I started out with cycling on my stationary bike for a mere minute or two and worked my way up to some sort-of-serious cycling. I do still need to take breaks every five to ten minutes because I get tired, and I certainly need to keep myself from overdoing it, but I can do some cycling.

Roughly six weeks ago, when the cycling started to look better and improving my health a bit, I ordered myself a Brompton bike ¹ . I took six weeks to arrive, in which I cycled and cycled. Then, a week ago, I finally received the call that the bike arrived and naturally I rushed to the bike-shop ² . I rushed a bit too fast as they still had to prepare my bike and do their regular tests. I waited patiently while they preformed their tests, and they kindly attached my bike-computer and bike-cage.

I hopped on it, and cycled home from the shop; a good 7.2 kilometres. I took breaks and walked while I crossed some streets because I couldn’t handle all the traffic. Before that day I hadn’t cycled in a little over ten years, an amazing event in this country ;) Halfway I stopped checking the map and cycled on instinct and mostly little signs that pointed to my neighbourhood. I happily arrived home, having seen more of my neighbourhood than I normally do.

Since last week I’ve cycled lots. Too much actually, and I crashed a bit a few days ago. I do like that I cycled so much and I really love my bike. It gives me more freedom to go places. I have cycled to the nearby shopping center, which I usually go to by bus. When I take the bus it takes me five minutes to get to the bus-stop, then I sit in the bus for fifteen minutes (after usually waiting for at least five minutes), and then I walk a few minutes more. By bike, it takes ten minutes–which of course doesn’t include taking the bike down and storing it somewhere upon arrival.

We’ve had great weather the last week, and both Nano and I enjoy taking the bike out and going for a ride. She can sit in the front basket (hooked up in her harness) or runs beside it.

So far, my bike has made my year :D

Most people with RA know the process of finding the right medication for their situation. The disease behaves roughly the same in every person, however, the specific differences make it a lot harder to find proper medication. No one pill will fix everyones issues. Some medication works for about 75% of the cases, and then the other 25% has the option of using some other medication which, again, also only works for 75% or so.

Trying to treat RA means having to try different combinations of medication, and different medications on their own.

I've had a mild form of RA so far, yet mine seems pretty stubborn. It reacts well to MTX on its own, although it never goes away completely. Once I experienced some sort of remission; or at least, a complete absence of pain. This happened right after my surgery, while I had loads of opiates and other painkillers and antibiotics and what not in my body. It lasted for about two weeks after surgery, and I think that the summer itself helped. My RA acts up badly during wet weather (which, here, means all year except those few summer days. That year however, we had a heatwave, which caused entirely new problems).

Only once before I seemed to have started to get in under control. At that time I took part in a trial with a new form of Interleukin-1 blocker (a so-called 'biologic'). As a side-effect of that blocker, my white-bloodcell-count dropped briefly, resulting in me not getting it for two weeks or so, and after that I could continue. It felt great, the pain almost completely went away in a matter of weeks -- RA medications tend to take months to work properly, making the whole search harder.

And then I learned about my cancer-gene. And then they terminated my participation in the trial. The blocker had a slightly increased risk of cancer, and with the gene the doctors -- understandably -- did not want to take that risk. After all, they needed the most neutral information possible to get it on the market (that never happened, I learned a year later).

Last Thursday, when visiting my rheumy, he brought up biologics again because my symptoms didn't go away. He wanted to discuss with the RA-team if I could and should get them, and which ones. He explained the higher risks of cancer (mostly lymphoma) and how they don't really know how it all worked yet and how RA-specialists around the world argued about the risks. He said he would discuss it and then phone me the next day.

Of course I got excited, the MTX alone doesn't seem to help enough (highest dosage doesn't take away any pain, just the swelling) and on top of it all, it makes me damn nauseous.

He phoned me, as promised, and explained that the team does not want to take the risk (yet) with my history of having had cancer and that stupid gene. I will start an intensive physical therapy program soon (already planned before last Thursday) and they want to wait and see if that will make a difference (and if so, how much). He also prescribed me a lower dosage of MTX (almost half of my current dosage), a double dosage of folic-acid and anti-nausea medication. I think my RA will get worse these coming few months, despite the summer. I also think the physical therapy will help at least a little bit.

I will know more in October... [MTX]: methotrexate [RA]: rheumatoid arthritis

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. *[MTX]: Methothrexate

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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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 got 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...

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.