Sclerosis Are Red
10 times
This was my tenth injection. Things are going fine with taking the medication. I have been instructed to alternately use 6 injection points, 3 on each thigh in order to minimize scar tissue.

As such I’m currently finishing my second cycle. The side effects are still pretty nasty and usually last around 2 whole days, but I try to be a brave little soldier, since it seems there is no real alternative for the time being.

Right now my throat is becoming a bit sore and in an hour or so I will get a fever. The pills I take reduce it a bit though. I’m experimenting with different doses and timing to see what works the best.

I’m pretty conscious about not taking too many painkillers, since the long term effects might be a bit of a strain on my beloved liver, who has already been exposed to plenty of agony in my younger years.

10 times
This was my tenth injection. Things are going fine with taking the medication. I have been instructed to alternately use 6 injection points, 3 on each thigh in order to minimize scar tissue.

As such I’m currently finishing my second cycle. The side effects are still pretty nasty and usually last around 2 whole days, but I try to be a brave little soldier, since it seems there is no real alternative for the time being.

Right now my throat is becoming a bit sore and in an hour or so I will get a fever. The pills I take reduce it a bit though. I’m experimenting with different doses and timing to see what works the best.

I’m pretty conscious about not taking too many painkillers, since the long term effects might be a bit of a strain on my beloved liver, who has already been exposed to plenty of agony in my younger years.

Every Sunday night I make something with a huge load of vegetables in it in order to brace myself against the side effects from the medicine.

The first two times self-medicating has been quite good, although the side effects are pretty intense.

Oh well, I won’t complain. Could have been worse.

Every Sunday night I make something with a huge load of vegetables in it in order to brace myself against the side effects from the medicine.

The first two times self-medicating has been quite good, although the side effects are pretty intense.

Oh well, I won’t complain. Could have been worse.

Tonight I treated myself for the first time with the auto-injector. I guess it went ok, although I was pretty nervous. I hope I can get a good night’s sleep with not too many flu symptoms.

Syringes crossed!

Tonight I treated myself for the first time with the auto-injector. I guess it went ok, although I was pretty nervous. I hope I can get a good night’s sleep with not too many flu symptoms.

Syringes crossed!

Permanent meds

Now I’m officially on a permanent medication programme. Unless the scientists come up with a cure, and they sure do try, I will be taking medication from here on out. This will have to be planned and aranged every time I would like to travel somewhere and I will have to adjust my otherwise insanely busy schedule a bit, since I will probably be marked by the side effects the full day after I’ve taken it.

That is a pretty alienating thought, and the more I think about it, the more I slowly begin to realize just how much this will change my life. The medication itself wasn’t so bad, and I didn’t feel too uncomfortable injecting the medicine myself although my hands were shaking pretty bad. Suck it up, trooper.

I have had a bit of a flu ever since, which is kind of normal, but it has been almost 48 hours now, so I’m hoping it won’t be like this every week. On med days, which will probably be every Sunday, I will be on a pretty hefty pill cocktail of both muscle relaxeners and headache pills, which is weird to be, since I have never taken any pills before.

In other words, a lot of adjustments and getting used to is pretty much the common denominator here.

Syringical luck

Today begins my medicine training.

Unfortunately, it will not as much involve me jogging up and down Philly stairs in a sweatshirt and -pants montage to the tones of Survivor’s Eye of the Tiger. Instead, it will be much more centered around me injecting a syrince almost two inches into my thigh once every week, giving myself the flu in the process, but hopefully also reducing the risk of future attacks.

It is an interesting tradeoff - to willingly accept a medium weekly illness in order to escape a potential major illness.

Sounds about right I guess, given the circumstances. Each individual responds very differently to the medicine, so with a bit of luck my side effects won’t be that bad.

Wish me syringical luck!

Things are good

I am quite well at the moment. I have decided to stop seeing a shrink and see how that feels.

Last Friday I found out that an Afghan boy I have been helping for a year and a half against all odds got asylum, which is absolutely amazing news.

I am so relieved and I really do think that everything is going to be ok from now on. And if this annoying condition of mine decides to rear its ugly head, I am prepared to fight.

Also, the NGO I volunteer for has some real interesting perspectives for 2012, which includes me going to Sierra Leone in the fall.

Next step is at the end of January, where I will begin on my medication. This will definitely be really annoying, but I am not complaining right now, in fact pretty far from it.

Mood swongs

Things have been decent as of late. My mood has definitely seen a positive change, and I’ve sort of established a strategy of stubbornness and angry optimism towards this whole morass.

Last week I went to see a neuropsychologist, who ran a number of tests on me and my brain. I have been experiencing and struggling with concentration and memory problems, which both my neuropsychologist and my regulard head shrink explained with emotional stress, which to be sounded very plausible.

I had, however, been experiencing some very odd situations, where I found spelling and grammar mistakes in my emails, which is something I never do. As in _NEVER_. I usually don’t even have to think about these things, as it has always come very naturally to me, and suddenly I start making the most retarded grammar mistakes in email. I must say, that worried me a bit at first.

They decided to run the tests, and they went great. They were a jolly mix of memory tests with numbers, letters, words and sentences combined with classic IQ test material, selecting a figure to follow a sequence etc. There even was a section with abstract drawing.

I fared really well, which made me happy. Both because these kinds of tests are something I would guess I would be very good at, so at least apparently I’m not getting any dumber (not significantly anyways, and not something I can blame the MS for), but also because I can now safely assume that the problems I have been having is mainly caused by emotional stress, as suspected.

So, at least that was good news. For once. I will begin my medication training at the end of this month. That won’t be fun at all, but I guess just doing something to actively reduce the risk of more attacks is definitely worth it. It will involve injecting an almost 2 inches long syringe into my thigh on a weekly basis, so expect some fun images and videos of that.

It is still pretty weird when I stumble into someone I haven’t spoken to in a while, who doesn’t know about my new exotic condition. I usually don’t tell them, since it is not something I wish to explain in 2 minutes and besides, does it matter that much? I would like to think that it doesn’t anyway.

I hope you are all well - I realize that relapses are very common and that a process like this often is 2 steps forward 1 step back, but I can’t avoid being rather optimistic right now about the whole situation. Bracing myself for nasty mood swongs in the next week or so.

Although, I can’t help wondering: Maybe sclerosis really can be red after all.

Being in the process of having to choose from several types of medication, this does very little to diminish my confusion.

However, it does sound really interesting and makes me think that with a bit of luck and a lot of scientist brilliance, brighter times could be ahead.

Tomorrow I’m going to go through a 3 hour examination of my brain due to recent problems with focusing and memory loss. I am not too concerned since this could easily be caused by emotional stress, but I have had a bit of a stomach ache all day nonetheless.

With the hopes for a much better 2012 than 2011, take care.

Identity issue

Last Sunday I went to a concert event, where a bunch of kids had to perform some songs they had practiced at school. It was pretty nice, but something took place that really made me think.

At one point the presenter on stage introduced the next song, which was one called Padded Bra by a Swedish singer called Louise Hoffsten. What really got to me was that the presenter mentioned something about her “unfortunately having been diagnosed with sclerosis but luckily she is beginning to recover”.

It struck me why he considered that information relevant for presenting a song that a bunch of kids was about to perform? And how will this affect me in the future?

The problem is this: If he cannot see past her condition when thinking about any other aspect of her life, her condition is far too big of a part of her identity, and almost certainly extremely inadvertent. This is a big deal, especially because this wasn’t even him being mean or cruel, this was him at his best.

He went for sympathy, but ended up with nothing but pity, which as fas as I’m concerned is by far the worst reaction I can be met with.

In Brian de Palma’s classic movie adaptation of Tom Wolfe’s “The Bonfire of the Vanities”, a character is introduced at a party with the words:

Sally: “Have you met Aubrey Buffing the poet? He’s on the short list for the Nobel Prize.”

Sherman: “Ah. Hello.”

Sally: “He has AIDS.”

Sherman: “Oh.”

This is exactly the same; someone assumes that mentioning a person’s disease is relevant, where it is actually nothing more than hurtful.

I can’t imagine spending the rest of my life being that guy with sclerosis. I will do anything to try to avoid that.

This is my message: Dear rest of the world. Please don’t think of sclerosis whenever you think of me. And certainly not yet anyways. Somewhere down the road I might have some visual markers (a cane or a wheelchair), which might be difficult to ignore, but until that, I would appreciate real much if I could just be the same man you’ve always known.

Think of the last time I made you laugh instead.

17 bottles of blood on the wall

Today I went to the first doctor’s consultation since my diagnosis. It went decently I guess, but it seems I won’t avoid beginning on medication right away. Their usual blood sample infatuation went bananas today, as I had to deliver a staggering 17 bottles of blood before I was allowed to leave. Those little vampires.

I had really hoped that I wouldn’t have to start on medication already, as it will be a quite significant encroachment on my comfort on a weekly basis. This is annoying, but I guess it is mostly for my own good, since it will help keeping the disease down and reduce the risk of future attacks.

I have to choose between two types, one sounding slightly worse than the other, so I guess the choice will be easy.

I have been reacting slightly more extrovertly during the last couple of weeks. This is remarkable, as I actually felt rather clarified about my situation a few weeks ago. I guess this type of relapse is common, so I try not to worry too much about it. I usually get a bit scared and sad, but it always help to cry a bit. Crying is really a magnificent steam valve, I’ve discovered.

Sometime in the near future I will have to learn to give myself injections, which sound incredibly scary.

I’m such a man that way. Chuck Norris signing off.