a bit over 5 years

I remember the day I got the diagnosis. I remember the phone call, you have autoimmune vasculitis. Come back tomorrow and we set out a treatment plan. Gosh, I was so happy. It has a name! I am real! I will live!

All giddy, I called R at work and he took the next day off from work and after the appointment, we took the slow road home through the foggy winter wonderland along the river. We stopped for lunch somewhere fancy and laughed and he was all calm when I cried a bit.

I remember when the doctors explained the medicines and the side effects and what I needed to look out for and what I must avoid (trivial stuff like no grapefruit, no alcohol, no ibuprofen, no aspirin . . .) and so on.  Oh, never mind, I thought. What's a bit of hair loss, weight gain, moon face, nausea, maybe liver damage, possibly gastritis and a lot of other stuff with complicated Latin names like gingivitis and stomatitis - compared to lung and/or kidney failure or death? You couldn't possibly argue with that.

Luckily, I am still waiting for the hair loss and the weight gain or the moon face. I have more or less accepted that bitchy gastritis and I let my GP worry about the liver values going up and down. But there are nights when I lie awake and consider my future life stretching ahead for years and years with painfully inflamed gums, always the taste of blood and the feeling of my mouth being on fire. And that, I admit, is the worst. At night anyway.

And now for some soppy music from the boy from Monkstown, a place that once was home:

lilac wine

Awake in the night I make up my mind to stop making such a big deal about it.

I am done with all these what if thoughts. For the time being. Breathe in, breathe out, smell the lilac through the open window. Don't give me any of this positive thinking crap. I am floating.

The experts spiked my drugs today, this could just be the kick starter of high dose cortisone. Health has become an ongoing compromise of effects and side-effects. Not sure where I am right now. 

But at least I am somewhere. Who knows, maybe I am even here.

dream

Sometimes the MTX nights are really odd. Last night I was tossing and turning in and out of sleep for the most part and this dream kept on resurfacing where I was giving a speech in front of a huge audience dressed like the guests in the Rocky Horror Picture show, all outrageously fake diamonds and tight dinner suits, while I was standing there in my washed out jeans and R's scratched old Blundstones holding up a gold coated Superman figurine, shouting at the top of my voice, "From the people who gave you Bad Bank and Greed, from the producers of Outsourcing and Landgrabbing, here is their new blockbuster: Vulture Funds!" And the crowd went ballistic. And I woke up in a sweat.

Think I better try and watch more silly romcoms for a while.

blame it on tooth ache

Thanks to MTX, my gums are sore and open and hence the tooth ache has been coming and going, spreading to the upper jaw into the phantom pain I experienced four years ago after the great dentist disaster that stopped me from hiking in the Golden Triangle hills with S and instead catapulted me helter skelter into the oral surgery nightmare summer of 2007. It seems that life has dealt me this card again. 

But mercyfully my doctor agreed that this is one shit load too many and so my box of pills has two more additions: one to alleviate the inflamed gums and one to handle the phantom pain. I wish these monsters would act instantly but no, patience is what's called for. And I have run out of this kind of virtue so long ago.

Sleep is a rare and precious gift these nights, a fickle one though and last night I spent much time alternatingly making up dream scenarios in full aching wakefulness or concentrating on the soles of my feet whenever the drilling pain in my gummy upper jaws seemed to spin me out of control. Those dear soles of my feet, with all mental efforts available I made them tingle and glow for most of the night.

During the days I am irritable and cranky. Working was the highlight and I feel dead proud for sticking it out even on days when all I want to do is run and hide. My in-trays are all neatly stacked now and priorities settled and long overdues over and done. Before I lock up for the night, I glance back over my shoulder and, wow, does my desk look good!!

On the home office front, I have started an assigement for a feminist/sociologist crowd translating a long essay on subsistence and autonomy - really good stuff - which is starting to become really frustrating. Frustrating because the two women I deal with are a) computer illiterate whereby anything beyond typing is wonderland, b) scatterbrains, charming but grrr! and c) never on time. They are both older than me, honoured academics, well travelled and well connected in the global feminist ecology network but when I try to teach show them the wonders of editing in word, they smile and clap their hands as if we were in nursery school discovering the miracle of how the red Lego stones fit on top of the white ones - every time anew.

I am probably certainly absolutely unfair now and way off the mark, blame it on tooth ache.

Yes, let's blame it all on tooth ache. All. ALL.

a talking to

... healing does not always involve a "cure". It happens daily to people with horrendous illnesses. Healing [...] is a balanced state of mental, spiritual and emotional well being that allows for comfort in an uncomfortable body and mind. If we can learn to be with this moment, what ever “this” moment looks like, then the fears that are tangled up with pain, the anxieties that tend to tip us off center, gently reach equilibrium again, at least temporarily.
Then for a breath
...maybe ten breaths,
we can experience relief and peace
...and begin again.

found it here

laryngitis

That's what immune suppression does to my body. Some time last week I picked up some nasty little bacteria which speedily settled in my sinuses, throat and larynx. If anything it goes to show that the drugs I have to take to suppress my immune system actually do work. Unfortunately, their work description is rather broad. Hence, I now have the dubious pleasure of hosting bacteria that rarely bothered me before. Nasty little critters they are, have done away with my voice for the time being - for reasons beyond my present powers of comprehension most people think that's hilarious and consequently send out hoots of laughter when I attempt to speak, or rather croak or whisper.
So now I have two more drugs to entertain my body chemistry. And I feel miserable most of the time (and I have developed being miserable into a fine art) but then again, the prospect of a highly likely recovery from a common ailment is an interesting change of proceedings after 14 months of chronic illness with weird symptoms. Reasons to be cheerful.

today

• finished a soppy novel about a childhood summer picking cotton in 1950s southern US, in bed with the window open and the cold air rushing in
• read absolutely all of today's paper for breakfast
• reviewed a translation of a Jane Goodall talk (ruffled the translator's feathers with my changes - tough)
• started to review a translation of a wikileak/Julian Assange interview
• received a paper on women and NATO to translate 
• spent 45 min with my physiotherapist angel
• did all three sudokus in today's paper and the one from Sunday's Observer for lunch
• answered a phone call from my boss who wants me back no matter how many hours I may be able to work
• drove to my office and spent 90 minutes at work
• chatted with U who just returned from hillwalking across Madeira
• followed G and W's blog about cycling to China, they have now reached the Black Sea
• sat in the car reading and, when it got too dark, sleeping while waiting for R to come back from his run
• cooked microwaved ready made frozen dinner
• injected weekly dose of MTX
• collapsed in front of TV watching another political superficial talk show on the 20th anniversary of German reunification
• managed to ignore symptoms occasionally
• spread my bits of activity through the day as if I was carefully squeezing toothpaste out of the last precious tube

ah yuk

The MTX shot went wrong tonight, about half of the stuff didn't go in, spilt all over my jeans instead.
So I can freak out now and watch my every breath or I can just get on with it. We'll see.
But I have to call Dr. B in the morning.

high summer

It has become really really hot. After a short trip (on bicycle!!) to the farmers market and a quick cup of coffee we buried ourselves inside the shuttered and closed house. In between rests and rehydration sessions I tried to help R finish up the renovations downstairs.

At midnight temps were still around 30°C and I was stretched out on the patio stones (which were almost as hot as an electric blanket) looking at the stars. Searching for cool and restful sleep we moved around the house with blankets and pillows meeting up here and there. Eventually I slept surprisingly well in the laundry with the door to the garden wide open, vaguely registering the heavy thunderstorm sometime in the early hours and if any stray cats came to visit I never noticed.

There was a refreshing breeze for a while this morning but I almost failed to notice as I was battling waves of nausea and worsening of various symptoms - all the time trying to avoid being hit by this oncoming train called panic. I had a good (?) cry and tried to sort myself out, as in what have we got here: side effects of MTX, maybe a little flare up due to the heat, tension, blocked nose, need to drink more, calm down, breathing, breathing, breathing... and as it happened before this image of A came to mind battling viral encephalitis after her bone marrow transplant thinking of her small daughters and I feel such a miserable pityful whimp - and elated because I am so much alive. So much alive. So much alive.

doubt

Almost every day  there is at least one moment of doubt whether this autoimmune diagnosis is valid. While I am on this roller coaster ride and long forgotten (i.e. absent for a couple of days) symptoms come back seemingly out of nowhere to viciously attack me, my imagination runs wild and the dreaded "what if it's..." pops up uninvited in my head screaming at me, especially at night in our lovely quiet neighbourhood without a noisy car, bus, train, plane, unruly cats or late night pedestrian to distract me.

So I juggle likely explanations about drug side effects and delayed efficacy, the hot weather, wrong food for dinner, menopause etc. around my head until I eventually fall asleep.

For some time now headaches have come and gone, increasing in intensity and a good day now is when the panadol kicks in which it rarely does. Yesterday all I could do was walk up and down in the garden trying to distract myself counting my breath, the roses in bloom and picking the first ripe raspberries - to no avail. In the end I remembered that one patient in my room at the WKH in November told me that she always drinks an espresso for her headache. And it did help  but I felt/feel like shit nevertheless. Doctors now want me to monitor time and strength etc. of headaches which obviously sends me into a fizz as I try to figure out why they are concerned.

And there I was not too long ago telling myself how lucky I am that I don't  have migraines. Whatever hit me yesterday was migraines' big sister.

The thought that I have been carrying this noisy dizzy vertigo exhaustion in my head and body for over nine months now (half time of my sick benefit) and that in less than three months ... fills me with panic and I end up weeping for my losses: working, cycling, walking, running, dancing, careless and thoughtless daily activities like boring household. Oh shit. This can't be it. No way. Come on, think of something. Quick.

Wednesday evenings

Every Wednesday evening for the past three weeks and for the foreseeable future just before the main evening news start on TV I wash my hands really well, tear two little sachets with sterile wipes, twist open the cap of the injection set, screw on the needle and remove the safety cover. I clean a bit of skin just below and to the right from my belly button with the first sterile wipe, stretch it between index finger and thumb of my left hand, take a deep breath and with my right hand insert that fine needle into my skin and push down the lever - or what ever it's called, must get the proper terminology eventually - to inject my weekly dose of MTX. Next, I use the second sterile wipe to clean any spills as I've been told they can cause skin irritation. I pat my belly and lean back and hope for the best.

Needless to say I never imagined I would end up doing this, injecting heavy duty medication with a list of potentially life threatening side effects into me AND feel grateful for being able to do this.

One restless night later: What went fairly well for three weeks appears to bring about fairly unsettling side effects. I feel as if an electric current is running through me. Another thing to bear out.

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.

Drugs

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.

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.