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
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.
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:
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,
Lhude sing cuccu!
Groweþ sed and bloweþ med
And springþ þe wde nu,
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.
Sing cuccu nu. Sing cuccu.
Sing cuccu. Sing cuccu nu!
Oy, . 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
It was only 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
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
Sunday was a day of rest for me as Thanos had to go to the convention at 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
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
By Monday evening we found our favorite
Tuesday we had a late flight, so we asked the hotel for a late check out and spent the day shopping at two of