Campanula flowering.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...


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My morning in the hospital.I spent the morning in the hospital, getting my iron-IV. My haemoglobin levels have dropped slowly since surgery and my iron supply has fallen well below normal levels. This probably plays some part in my ongoing fatigue and my doctor decided that instead of pills, I'd get two iron IVs. Today I had my first, next week the second.

I expected to have to wait a while and brought my drawing book, and then drew the IV several times.

I've drawn my IVs before, once when I had to get a CT-scan for my lungs (in the beginning of getting ill) and then when I had surgery and they had to give me a new one every two or three days because it kept clogging up.


Drew my IV in the hospital. Detail of booklet, page 2


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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.

Continue Reading »


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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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