High in the sky

High in the sky
Drawing hot air balloons.

Having the kitchen redone eats up a lot of energy, because it requires me to sort through all my stuff and get rid of what I don’t need (or want) anymore.

I say require on purpose. Putting everything back without sorting will only eat up my energy more in the long run. Having stuff in the way that I don’t want, don’t need or can’t use gets annoying. So I slowly go through it all and put the things I want and / or need in the cabinets. It works pretty well.

Today I made two drawings of hot air balloons. I used to live somewhere where they let them up several times per year. Sometimes I’d go to the field and watch it. Nowadays I live near the airport and have lots of planes flying over.

Finding lost things

Finding lost things
Drawing of my leatherman micra

Today I rummaged through my rucksack looking for a bottle of vitamins I thought I bought and didn’t find it — I still don’t know if I actually bought it. When I dug into one of its pockets I felt an unfamiliar cold shape and took it out.

Surprise! My leatherman micra, lost for years. I bought it at the start at my eurotrip, thinking it would come in handy. It has a pair of scissors that did proof useful for opening food packages and such. After returning home, I misplaced it for a little while and then found it shortly after I moved.

And then I misplaced it again.

Its empty cardboard box lay on my nightstand, for years, as a reminder of it. At times I googled the type, thinking of purchasing another one, but never did.

And today, I found it.

I think I’ll put it on my keyring.

Solar panel

Solar panel
Solar panel.

I bought a little solar panel recently. It lies in my windowsill, with open window, sucking up the sun’s rays.

At night it recharges my phone, which works very well. It came with lots of different plugs to charge different phones and even my Nintendo DS. I like that I can use the sun to charge things. It also has a separate attachment so it can charge batteries. I haven’t tried that out yet.

I made this drawing while my hand hurt badly and cramped up a lot. Not the smartest thing I ever did.

Drawing my hat.

Drawing my hat.

I went out to the mall (yes, we have one!) for some groceries and somewhat needed purchases and failed horrible in the last category. They did not have what I wanted.

Crossing the large parking-lot to the stores I realised I forgot to bring my hat (or cap). My scalp burns easily — which hurts — so on sunny days like today I wear protection. I hopped into the nearest clothing store and found exactly one hat. A simply grey-ish bucket hat. I now have a full quartet of bucket hats.

It posed nicely for my drawing.

Software sucks

Software sucks

I spent a frustrating few hours yesterday and today trying to get things to work properly. I updated to WordPress 3.0 (it went well in a test-environment) and then stuff started to break big time.

I use Textile for markup and suddenly, that caused issues. I tried switching it off, and switching to a lighter version, and I still had trouble editing and displaying posts. Eventually I deleted the WordPress files and installed them again and tried to get everything to work again as I wanted.

Then my RSS-feed broke and Feedburner started to complain.

I think I fixed it...

I really hope I did...

The ongoing search for proper medication

The ongoing search for proper medication
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…