27 April 2010

Little trick

Whenever things get too much, when the symptoms become too heavy to continue any semblance of active life and I am reduced to breathing through a wave of headsplitting pressure, roaring, shivering... and my fear and panic I have started to comfort myself with the thought that at least I don't have cancer or cluster headaches, migraines, multiple sclerosis or whatever gruesome ailments comes to mind.
It doesn't really work. I am too fucking mad and self centered.
Well, I'll try it for a while.

25 April 2010

let go of any striving

background noise inside my head for some time now - trying to recognize the voice, remember where I heard it first
Yoga teacher on video - many years ago - calm

In other words: get a grip. Spent a good bit of the day attempting to work, proofreading various manuscripts, dealing with hepatocellular carcinoma and end stage liver disease. Gosh, I am soo healthy. Like shit.

The invisible ones

I can see you now. The young woman walking with crutches, skinny and slow, pale face concentrating on the next step. The handsome man in his white jeans, bright Tshirt and fancy earring, he moves with a slow limp, one leg completely stiff. That women over there with her swollen face and ankles, obviously short of breath and on some medication, carefully negotiating her trolly with the shopping, desperate to get home. And I am thinking how sorry I feel that they may never be able to go on one of my long walks through the hills and the gorgeous forest down south from here. May never cycle along this wonderful river on a sunny May evening with the soft wind in your face and the boats slowly tutting along beside you. And then it hits me:
Neither may you. Well, certainly not now, not for the last eight months, you haven't and there is nothing but the faintest hope to think you may ever again be able to.

Mantra, mantra quick:

The new drug takes 4-8 weeks to work, I am on week two.
The body is a system always striving for health.
I can hear again.
My eyes are fine.
Impermanence, everything changes.

Listening to your body?

This is the advice I get from all sides. What crap! I have been listening so hard it drives me mad. The messages are utterly chaotic and confusing. What is my body telling me? Drivel, really. Move, get up, clear your head, no, no, lie down, rest, stay calm. What is that shaking body telling me? This roaring head, this pressure in my ears, this racing heart? This feeling of concussion with flu?

Last Wed I got the second shot of the new drug No 2 and Thur and Fri WERE better days. Yesterday started out somehwat slower and heavier and by early afternoon I was moreless flat out. Got mad and picked myself up to cut the lawn and cycled down to the river fuelled by such fury and desire it almost felt like happiness, while all the time the energy was draining out of me like water from an open tap. The rest of the evening was a flurry haze of shaking and shivering watching TV and drinking herb tea. Last night was not a kind one and the morning confirmed what I had been running away from yesterday.

All I am left with is the hope that once again things may get a bit better.

21 April 2010


The wise man told me today:
Unpleasant feelings like fear and anger are also sources of energy. Therefore, we should not suppress fear and anger but stay in touch with them through our breathing and accept them in the knowledge that they are mental and physical energies.


Drug No 1 is supposedly giving me a moon face and generally make me gain weight - hasn't happened yet but who knows. However, drug No 2 is reducing my appetite and in most cases results in weight loss. Noticed that already.
While drug No 1 is causing my facial hair to grow - I have a slight blond beard by now -, drug No 2 makes my hair fall out, my brush and comb are full of hair and so is the drain of the shower. There is still plenty of hair to go.
Then there is drug No 3 to counteract the gastritis and other digestive disturbances due to drugs No 1 and 2 and for the really bad nausea, there is drug No 4, but only occasionally. Twice a day I take drug No 5 to counteract pontential osteoporosis due to drug No 1 and then there are the drops and lubricants for the very dry eyes and nostrils due to drugs No 1-1000000. Almost forgot drug No 6, to be taken 12 hours after the weekly injection of drug No 2. An innocent little yellow pill that is.
Every night I sit down like a good little nurse and dole out the stuff into this neat box with separate compartments and put it beside the bed before I go to sleep so that I take drug No 1 at the proper time of my circadian cycle. It's like playing hospital.

20 April 2010


Name of that unfortunate ship stuck in polar pack ice. Shrink no 2 told me to work on endurance. Said I was too used to hold the strings, to order and direct and organise and cope but not experienced in enduring. She also said it could be due to experiencing significant helplessness as a child. Huh? Obviously, but do I want to travel down that road - again?
But enduring, that's a challenge. Reminds me of K explaining to me how a panic attack works, how the body can only sustain panic for a limited period of time (20 min) before the adrenaline rush slows down and the body simply has to calm down again.

19 April 2010

hospital no 4

The volcanic ash plume is hovering somewhere above, my cat has gone blind and spends her days calling for me - this evening I found her stuck in the bookshelves below the Times Atlas of the World about to be crushed. She silently struggled to escape with her blind face turned towards the wall.

I spent last week in hospital no 4. My room mate was an elderly Turkish woman in much pain who spent her day and most of the night reading the Quran and some other holy book and praying every hour. Her German was poor but we found a way to communicate and she told me about her pilgrimage to Mecca and shared the delicious Turkish food that her visitors had delivered. Her cellphone ring tone was James Brown belting out "I feel good".
The hospital: doctors who understood my symptoms, careful and thourough examinations - a change of medication. Very detailed instructions and guidelines. Patience once again. My new friend is called methotrexate. We are only starting to get to know each other.
The chief doctor does not think I have Cogan's, but "only" autoimmune vasculitis and my ears were once again fine.

06 April 2010

This morning I sat in yet another waiting room, this time to get my eyes checked because of possible autoimmune involvement and potential side effects from the medication. Dr F was brisk and informed and reassuring. My eyes are fine and she will look at them again in 10 weeks time. And she also reckons that my eyes are not at risk at all.
So far so good. Sitting in the waiting room I noticed how anxiety was expanding inside me like a bubble ready to burst. What is happening to me? Where is my cool? I have always been impatient - so what - but this is one step further. It is scary.
The Easter weekend was a struggle: symptoms, exhaustion, loss, despair - a wild mix and one hell of a ride. Why me?