28 May 2017

Another very hot day with only a hint of a passing thunder storm this late afternoon. Breakfast outside was ok but for lunch we opted for the cool inside. Half an hour ago, R emerged from his study where he has been grading papers all weekend, stretched himself and suggested a short spin on the bicycle. Like a fool I got up and looked for the keys and my phone and made it exactly as far as the back steps.

Yesterday was a vertigo and nausea blur, vague memories of eating delicious ripe apricots in the evening, balancing on my bed, carefully holding a paperback in my arms waiting for the letters to stop whirling and turning, telling myself that all vertigo attacks have subsided before as this one surely will, eventually.

These days it is blatantly obvious that I am simply the wrong person for this disease.
Assuming that there is indeed a right person to live with a serious chronic condition, the one with all the red warning lights and the overlap syndrome and B symptom caveats. In short, the kind which causes smart medical experts to sigh and get off their comfortable chairs, walk around their shiny desks to hold your hands. If they have ever heard of it, that is.

This disease that currently rules my life (it comes in flare-ups and I remain hopeful that like previous ones the current one will eventually subside, too) used to be called Wegener's disease, named after a German pathologist who first reported on this condition in the 1930s, a time when there was no treatment, the few patients he based his findings on had died quite suddenly.
It's just my luck that Friedrich Wegener was a nazi, and possibly a dedicated one. This from an investigation by Woywodt and Matteson in Rheumatology (Oxford) (2006) Vol. 45: 1303-1306:
The facts we have uncovered do not prove Dr Friedrich Wegener guilty of war crimes. However, the evidence suggests that Dr Wegener was, at least at some point of his career, a follower of the Nazi regime. Dr Wegener's mentor, Martin Staemmler, was an ardent supporter of the racial hygiene. In addition, our data indicate that Dr Wegener was wanted by Polish authorities and that his files were forwarded to the United Nations War Crimes Commission. Finally, Dr Wegener worked in close proximity to the genocide machinery in Lodz. His interest in air embolism is also troubling. Although we know that Wegener was a popular and skilled teacher and colleague, our data raise serious concerns about Dr Wegener's professional conduct.

In 2008, The New York Times wrote that a nazi past casts a pall on name of a disease. For a while, this story was my party piece, I told it with a grin, to take the edge off when I had to react to another round of never-heard-of-it remarks. I don't do that any longer. I am also not one who is hurt or insulted by the name of this shit disease. That's the least of my problems right now.

Today, I am mostly just mad and jealous of R and everybody who can walk without needing a wall to hold onto. But I am repeating myself.


37paddington said...

I understand being mad and jealous. I often feel it too. And then I feel woe is me because i truly believe people think I'm malingering about the pain I pretend away with every step. It's not visible, so not easy to sympathize with. I hope the vertigo goes soon, and also the heat. And I hope the flare up flares all the way back down, soon soon soon.

Ms. Moon said...

Dizziness, vertigo- these are things that those of us who are lucky never have to think about and yet, if you have them, they are completely life-altering. As you know.
May this pass. Soon.

Colette said...

Sending love your way. I had vertigo...once. With accompanying dizziness and nausea. It was awful. I can only imagine how hard it is for you to struggle with this disease that becomes an unwanted visitor all too often.

Anonymous said...

Thinking of you and hoping that this vertigo will pass, and you'll be back up and standing steady. Take care there, Sabine, and know that heartfelt good wishes are coming your way from the far north coast of California.

molly said...

....and from the gulf coast of Florida too. My doc recently took me off medicine I've been taking for years. Pretty toxic stuff but it works magic, except for the possibility of some of it being "black" magic. So the knees I've taken so much for granted? Not taking them for granted anymore, looking, in fact, for a wall to hold onto! Hope your dizzyness fades away and leaves you more ready for a bikre ride.

Elizabeth said...

I really admire how you write of your illness, how you convey both an incredible patience with what is as well as the raw truth of discomfort and pain. I hope you are writing a book or collection of essays--I revel in your words and writing. It is both inspiration and encouragement to me as a writer and a caregiver.

Vagabonde said...

Thank you for coming to my blog. I read the article you mentioned – I hope the research will prove beneficial as there is very little right now for Alzheimer. Your friend is lucky to have someone to talk to, because isolation is a problem. I read a bit about your illness, which I did not know. I am so sorry that you are going through all this pain and problems. I understand about the not walking because I can barely walk with my 2 canes. But with me, I hope, once I have knee operations it will get better. The knees are bone on bone and in constant pain. The doctor said I should have had operations years ago, but could not because of my husband’s illness. That is why we are moving to Nashville – to be closer to our younger daughter. But trying to clear out 40 years of accumulation in our house in Georgia, while walking with 2 canes and having to supervise my husband 24/7 makes everything super slow. I should not even write on my blog but that keeps me sane, a bit. I’ll try to come back and read more of your past posts – after my knee operation in July when I won’t be able to move much. I, also, watch people walking freely, and dream about it.

joared said...

I do hope you can eventually be free of your vertigo and all those debilitating symptoms. I have had a few bouts myself associated with inner ear issues and a combination of triggering factors. All is under control for me without medication and I could only wish the same for you.