Radiance

O setting sun
O passing day
The colors run
a bright array
And though the night
will close your eyes
All's set aright
by Dawn's sweet rise

Sisyphus

When you live your life with a chronic illness you often find yourself fighting battles of different intensities from one day to the next. A lot of “healthy” people often assume that it is the big battles that are the hardest – the long hospitalizations, the flare-ups, surgeries – yet those fights can be relatively easy. In big battles you end up putting all your energy into trying to survive and you know the cost of defeat from the beginning. I find that it is the little battles I struggle most with – day to day living with pain, fatigue, taking new medications (with new side effects), limitations, sun exposure...the list can be quite endless if you spend too much time thinking about it.

My latest Sisyphean challenge involves a new medication that I have recently started taking because my kidneys are refusing to cooperate fully with their natural filtration process. I did give my kidneys a stern talking to, but unlike me they seem to be stuck in a perpetual teenaged state of defiance. This drug can encompass a host of side-effects, some of which I have already enjoyed in just a week of my daily dose. It started with headaches for the first four days (which have thankfully waned, as the drug brochure promised), and has now erupted into waves of extreme fatigue, frequent bruising, and some additional joint pain (honestly, one can never have enough joint pain). I am now also more prone to infection and contracting common ailments. The icing on this side effect cake is that I will have to take blood tests every few weeks to make sure the medication isn’t causing more extreme bodily harm.

Basically, I went from someone who was feeling relatively healthy, with lots of energy and hardly any pain to someone who is constantly tired and in pain – all to fix a small problem with my kidneys. I once again managed to push that rock all the way to the top of the hill, only to have it tumble back down. The Greeks never realized how much their mythical punishments mimicked real life. Or maybe they did. The only difference is I know this isn’t a punishment, it is just the way things are for anyone who fights a chronic illness.

So I fight this small battle like I have fought numerous ones before and no doubt will in the future. I will come out the victor, of that I am certain. And if I am lucky, I will have a moment to sit on my rock and listen to Orpheus’ beautiful song before the battle starts all over again.

Tempest

There's always a period of curious fear between the first sweet-smelling breeze and the time when the rain comes cracking down. ~Don Delillo

Twilight

"Parting day Dies like the dolphin, whom each pang imbues With a new colour as it gasps away, The last still loveliest, till--'tis gone--and all is gray." ~Lord Byron

Pictures of birds with that WTF? look on their faces

These pictures are really horrible to look at, but it sure puts the oil "spill" (deluge?) into perspective.

Thankfully, BP is taking some responsibility and is funding the rescue efforts of the International Bird Rescue Research Center. They accept donations, but are urging people to send donations to their local wildlife rehabilitation organizations. As the folks at the IBRRC put it, "A pelican is a pelican whether is it tangled in fishing tackle or oiled!"

This is not a post meant to criticize or shame big oil, or the use of oil, or anything like that. It is simply that the things humans do that destroy wildlife on such a large scale make me very sad. This planet belongs to all living things, and despite their (apparent) lack of sentience, animals and plants deserve to be here just as much as we do.

Proof that I married a geek

Somehow my husband managed to dig up his old Amiga from the depths of his parents' summer house, and to our surprise, it still worked! They just don't make 'em like they used to.

Butterflies

I’ve always heard people say something along the lines of “if you’ve lived with something your whole life, it isn’t so hard to accept it”. This phrase has usually come up in discussions about such devastating things as poverty, illness, blindness – you get the picture. I guess it makes people feel better to think that this statement is true, when the reality is that it is not.

I’ve had Systemic Lupus Erythematosus for so long that I really don’t remember what “normal” life was like. I started getting sick at age 2 and was finally diagnosed when I was 7, and we all know our memories of those early years are difficult to access (perhaps in deep psychoanalysis, but I neither have the time, money, nor inclination to embark on such an endeavor). So let me tell you, living day in and day out with this disease, even with no memory of what it is like to not be sick, is not easy.

For the past 18 years I’ve been relatively lucky, with no serious hospitalizations or flare-ups of the illness. I maintain my health with a minimum of medication, although if I go too many days without that medication I feel it. It is easy to gain a measure of confidence when you go so long without complications – to feel invincible – as if you can walk right up to the precipice and jump to find yourself flying instead of falling. With Lupus it always seems that it is at that exact moment, mid-flight, that everything changes and you begin to fall again. You can feel perfectly healthy one day and unable to get out of bed the next. Always you have Damocles’ sword hanging over you, dangling, threatening flare-ups, kidney failure, neurological damage, and a host of other problems. You never have power over your own health – the best you can do is take care of yourself and hope that things work out for the best instead of the worst.

This is what I wish most people were more aware of when it comes to knowledge of Lupus. There is no one state of being with this illness. We aren’t always withering away in our beds. We are strong, we are happy, we are living our lives as well as we can. And if we are very lucky, there is always someone at the bottom of the precipice to catch us.

Today is the last day of Lupus Awareness Month. Learn the facts by visiting the Lupus Foundation of America website. Pass it on.

Sea at sunset, Halkidiki

Sea at sunset, Halkidiki
Originally uploaded by melusinagr

The beach at Nikiti in Halkidiki is one of my favorite places in Greece. It makes a nice weekend getaway for anyone who lives in and around Thessaloniki. The shops aren't too touristy and there are some truly exceptional restaurants (Grada and Kyani Akti to name a couple) - with reasonable prices.

However, my biggest battle when it comes to places like this in Greece is with the sun. Living with lupus means I can't just run out to the beach any time I want, I have to plan my outings in the early morning or just before the sun goes down. For the most part I don't mind, as these are quite peaceful times to go to the beach. Still, sometimes I wish I could just go be in the sun without worrying about getting sick. During the day it can really bring me down, but by the time I get out into the early evening and see the sea looking like this, it seems just as beautiful as it does during the day.

A rose by any other name is just as sweet

The rose
Originally uploaded by melusinagr

Sea side

DSC02400
Originally uploaded by melusinagr

It seems I've been at a loss for words lately - I'm always either too tired, too grumpy, or too disenchanted with the way things are in the world. Since I take a lot of pictures, I'll let them tell my stories now and then, at least until I have something to say.

Oh deathless sea, tell what you are whispering*

*Quote from the poem "I lived the beloved name..." by Odysseas Elytis

Lupus Awareness

I've shared the story of my life with Systemic Lupus Erythematosus here before. Now Lupus Awareness month falls in May, and I feel that even though I'm not keeping up with the blog as regularly as I used to, I need to promote awareness and help to quell some falsehoods that might have arisen during the Miss USA pageant last night.

It seems that during the Miss USA pageant, Morgan Woolard, the runner up for Miss America (from Oklahoma), claimed that she cured herself of Lupus. Obviously, this is impossible (unless she had drug-induced lupus, which is a bit misleading). Spreading false information like this in such a public forum hurts the efforts of all of us who are working towards promoting awareness for Lupus, and it belittles those of us who have been fighting this illness day in and day out. Spread the word...learn the facts about Lupus at the Lupus Foundation of America website.

I live in Greece, so I did not have the opportunity to watch the pageant first-hand. I only heard about Ms. Woolard's claims from scores of angry Lupus patients across the internet. Still, misinformation is no way to promote awareness, especially when it is estimated that around 80% of the public knows very little or nothing about Lupus - and so I wanted to share the facts.

From the Lupus Foundation of America website:

It is true that medical science has not yet developed a method for curing lupus. And some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:

• follow the instructions of their physician,
• take their medication(s) as prescribed, and
• know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.

Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization. There are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician's instructions.

New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.

Please spread the word and Band Together for Lupus!

Sumer is icumen in

Sumer is icumen in,
Lhude sing cuccu!
Groweþ sed and bloweþ med

And springþ þe wde nu,
Sing cuccu!
Awe bleteþ after lomb,
Lhouþ after calue cu.
Bulluc sterteþ, bucke uerteþ,
Murie sing cuccu!
Cuccu, cuccu, wel singes þu cuccu;

Ne swik þu nauer nu.
Pes:

Sing cuccu nu. Sing cuccu.
Sing cuccu. Sing cuccu nu!

Summer has come in,
Loudly sing, Cuckoo!
The seed grows and the meadow
blooms
And the wood springs anew,
Sing, Cuckoo!
The ewe bleats after the lamb
The cow lows after the calf.
The bullock stirs, the stag farts,
Merrily sing, Cuckoo!
Cuckoo, cuckoo, well you sing,
cuckoo;
Don't you ever stop now,


Sing cuckoo now. Sing, Cuckoo.
Sing Cuckoo. Sing cuckoo now!

Easter

München

Oy, 5am. This is not a good time to wake up for someone who is unequivocally NOT a morning person. Yet there I was, rising and shining, running around like a decapitated chicken doing last minute things so we could our cab to the airport for our trip to Munich. Of course we ended up at the airport much earlier than we needed to be – which was ok because security was a breeze. Two of my husband’s colleagues had already arrived and we all sat around drinking coffee and juice and pretending we didn’t really want to be sleeping (or maybe that was just me). If I thought a 5am awakening was bad, you can imagine the bile rising in my throat as wave after wave of psychiatrists started arriving at the airport. Since we had booked our own flight, I didn’t necessarily think we’d be on the same plane as all the shrinks that were being sponsored by big pharma. Unfortunately, that was the case, as my husband joked about all the immediate openings there would be for young psychiatrists in Thessaloniki if this plane went down.

Ah, Munich. The weather was quite temperate when we emerged from the airport, despite the predictions from Germany-savvy travelers that it would likely be cold and snowy. What a luxury to be able to take the subway from the airport to a station (Hauptbahnhof) a block from our hotel! We stayed at Hotel Meier, which is on a lovely pedestrian walkway, and more importantly right next to a Starbucks.

It was only 11am when we arrived, but the hotel gladly accommodated us by giving us an early check in, which was awesome because I needed a nap. When we woke up in the afternoon the first order of business was lunch – my husband wanted (no, demanded!) German sausages. We explored the area around our hotel fully expecting a decent place to lunch, to no avail. It was all fast food of various ethnicities, but no sausages, so we went back down to the subway station (which had a plethora of bakeries and sausages) and got some there. We did, however, see the Justizpalast while we were walking around, so at least that was something.

Later in the evening, we decided to get more adventurous. We took the subway to Marienplatz, a popular square in the city center. We were greeted by an anti-psychiatry rally being held in the square (this organization is apparently linked to this one). We had seen them before, marching through the streets with their sign and their cart depicting miserable tied up crazy people. They claim psychiatry is an industry of death and that there are no real psychiatric conditions, just somatic problems that can all be cured with vitamins and exercise. If only. There are things about psychiatry I don’t like (particularly tying up patients), but I don’t work with patients every day and I really don’t know what is necessary and I certainly don’t have the medical background to judge. While this group makes no claim towards Scientology I find it rather interesting that their beliefs regarding psychiatry seem to be exactly the same as Scientologists. Thanos, always in an effort to be fair, actually visited their “museum” at one point in our trip and had an interesting discussion with the people there. Certainly there are issues to debate, but I think we can be grateful that there are doctors like my husband out there working hard every day to address these issues and try to make life better for psychiatric patients.

One of the most fabulous aspects of Munich is the architecture and Marienplatz houses one of the most stunning examples in the Neues Rathaus. The details on this building are amazing, and can be seen in pictures here, here, here, here, and here.

Also off Marientplatz is the Altes Rathaus and Spielzeugmuseum.

Just around the corner you can find the Frauenkirche, unfortunately you aren’t allowed to take pictures inside.

I wanted to see Michaelskirche but, as things always go for me, it was undergoing renovation and covered up. To be fair, the covering had the outline of what it is supposed to look like, and I have no idea why I did not take a picture. We finally strolled down Neuhauser past the church and searched for a place to eat, and we finally came upon a nice family restaurant called Bohne & Malz, which is apparently a small chain in Munich.

Sunday was a day of rest for me as Thanos had to go to the convention at 8am to put up his poster and enjoy a day of psychiatric lectures. I slept in and then went to Starbucks to have a coffee and people watch. After meeting Thanos for lunch I decided to go back to the conference center with him for shits and giggles (and to see another area of Munich).

Sunday evening we made our way back to Marienplatz to find a good old fashioned Bavarian tavern. We went to Weisses Braühaus, which was recommended in our city guide. I had a fine Pils and my first wiener schnitzel. Yummy!

Monday we went to the Deutsches Museum, which covers pretty much all science and technology from the earliest inventions to the present. It is a huge museum and will definitely require another visit. Plenty of pictures can be found here.

By Monday evening we found our favorite Germany bakery – Rischart (where else?) on Marienplatz. I discovered something dangerous called butter cake. I’m glad I don’t live in Germany. We attended a pharma dinner at a restaurant at Residenz, the site of the residence of the former Bavarian kings, which was mostly destroyed in WWII. The rebuild is impressive but a bit disappointing. Like some kind of idiot, I didn’t have my camera with me that night, so I missed taking pictures.

Tuesday we had a late flight, so we asked the hotel for a late check out and spent the day shopping at two of Germany’s fine department stores – Karstadt and Kaufhof. We were so tired by the time we got on the plane, we were ready to be home.

Munich is a fabulous city, full of things to see and do, with friendly people and beautiful scenery. I intend to go back more than once, and highly recommend it to everyone!

The five stages

A month ago, one of our dear cats died. Princeton was 14 years old, an old cat, to be sure. I just wasn’t ready to lose him yet. I was in denial about his condition for two months as he lost weight (he went from 9 kilos to 3.5 kilos), thinking if I can just fatten him up again he would be all right. I should have prepared myself better, because his quiet death in my arms was more than I could bear.

He was a king among cats. He was my friend, my guardian, and my companion. He accompanied me on the biggest journey of my life. He was freakish, and silly, and had a bad case of obsessive compulsive disorder. Now he is gone, and my heart is empty in his absence. I will cherish my memories of him, and move on.

Meow old friend. Meow.

Princeton
1995-2010

Bloghead revisited

I know, I know. I haven’t written anything useful (or not useful for that matter) here for a long, long time. I’m not really sure I have a good explanation, except that my Greek life has become a bit mundane.

Going back to the States wasn’t as bad as I feared. One thing I did realize is that I have become overly accustomed to how things are in Greece – so much so that I was constantly amazed at how easy some things are in the U.S., and how friendly people are there. Did I always take these things for granted?

Yet, as much as I long to be near my friends and family again (and to see my niece more often than every seven years) and as wonderful as life in America seems to be, the U.S. is no longer my home. I was most acutely aware of this when my brother-in-law was driving us up the long, winding slope on our way back from the airport. A couple of miles away our house came into view, nestled against the side of the mountain. I felt happiness and relief. This is the place where I belong, at least for now.

It is a phase in my ex-pat life I never really expected. To some Greeks I am still ξένος (and will always be), but for me, Greece is home.