23 May 2019


pink clematis

We met the latest member of staff at the immunology department last week, a Greek doctor, very polite and ever so well dressed in his starched white coat, silk tie and blue argyle socks. My guess is he is probably not a day older than 35. But in my experience - and there is research to back this up - young experts who want to get ahead and become senior experts work hard to stay on top by reading, attending conferences, checking with colleagues and all that stuff doctors are meant to do before the know-all rot sets in. 

This time, R came along because he had time to make sure I mention all the shit that's been happening and not be full of smiles and I-can-copes until the door hits me in my back on the way out. For this purpose and also to show off how organised he is, R had made a nifty list using some app on his phone and he basically read out all the items one by one in his gravelly low voice while I tried to pretend he wasn't there and that I was actually quite well and surely believing is seeing.

But our Greek expert was right on the ball and after some tsk tsk tsk and a rather painful examination of my hands and feet, he put me back on all the drugs his colleague had dropped so swiftly three months ago. Experiment failed? I asked. Afraid so, he replied.

Fun fact: If the joints in your hands and feet hurt at night when you are all rested and just try to sleep, it's called arthritis (-itis meaining inflammation), if they hurt when you move them but are ok at night it's called arthrosis (old age and wear and tear damage), if they hurt regardless of what time of day or night and whether you move them or not, it's called rheumatoid arthritis (which is another word for you-are-fucked). 
So basically, my immune system has become bored with the blood vessels and has moved onto joints and tendons. 

lemon
There is a pattern here. Because back in the day, in the summer of 2000 to be exact, it started with autoimmune hepatitis, something I decided to almost completely ignore because: disbelief and being arrogant and ignorant and convinced that all doctors are in cahoots with the pharma industry. I actually considered filing a complaint when after the first liver biopsy it was suggested that I put my name on the transplant list just in case. 
For a long time, I thought I had shown them all (them being the medical cahooters) how in tune I was with my body when my liver recovered after 18 months of healthy diet, meditation, no alcohol and some herbal stuff. I did not want to know that 18 months actually means 18 months of ongoing stressful damaging inflammation caused by a hyperactive immune system and that a swift course of steroids plus immune suppressing drugs, 3-4 weeks max., would have brought it back in line. Hindsight. Haha.

Anyway, the pattern: autoimmune hepatitis turned into ulcerative colitis turned into autoimmune  vasculitis and now rheumatoid arthritis. Even I can see that and I can be blind to facts like the next person. Plus: my liver values are slightly up again. My lung function is somewhat reduced and who knows what the cardiologist will find next week.

In short: I am slowly climbing down the steroid mountain again, reducing weekly in tiny steps, back on immune suppressing chemo etc. Yawn. Old stuff. 

no idea

But today is warm and mostly sunny and I am out on the patio, lazing on the sunbed R fixed for me, the beehives from my neighbour's garden are humming, I am reading and dozing (I am on official actual holidays from work), in between I wash a window or two, fold some laundry and pretend that all is well. 

Can someone tell me what this last plant is? The bees love it.




10 comments:

ellen abbott said...

don't know How I missed your last post. I have arthritis in my hands. can use them without pain and then they zing me all night long. it was really bad when I was cutting stencils all the time. so sorry to hear you are back on all those drugs and it's all STILL THERE. it looks like I'm headed for the invasive procedure since the drugs are failing to do the job.

Anonymous said...

I am intrigued by the definition of arthritis, which now that I've read it is exactly what I have. Osteoarthritis in my lower back, arthritis in my left wrist and thumb joint (seriously painful at night). I hope that the medications you are on will help in every way. Thinking of you and sending you good healing wishes from California.

Ms. Moon said...

Such a hard, terrible lesson to learn that no, sometimes modern medicine does actually help. But I know exactly why you chose not to go down that path at first. We secretly believe, all of us, that we may be the first immortal. And of course- Big Pharma!
I have a friend who never went to the doctor out of disdain for "western" medicine and by the time he did out of desperation for issues he could no longer ignore, he had Stage IV prostate cancer. And after one surgery he and his wife decided that they would kick the cancer's ass with diet and so forth.
Well. It hasn't worked. But they wanted to believe!
Don't we all?
But if it were as simple as this diet and those supplements, no one would die of cancer.
Reality is the bitterest pill of all sometimes.
How I wish that none of this illness was a part of your reality. May this new doctor know his stuff.

My life so far said...

It's been going on for a long time. Do they know what started off the auto immune firestorm in the first place? Virus? Glad your hubby when with you.

Sabine said...

There is still all lot of speculation about what causes autoimmune diseases. Obviously there has to be a (genetic) presidsposition that gets triggered by an event. In my case I can trace it back to a bacterial infection of a minor cut that was treated by high dose penicillin in early 2000. The verdict is still out as to whether it was the infection or the penicillin or both that sent the wrong message to my immune system causing it to overreact.

Sabine said...

It's all in the Greek ending -itis, which means affected/inflamed. Those clever building blocks used to construct medical terms. Arthron is the Greek for joint, arthritis = inflamed joint. Some days I think I had to spend eight years learning classical languages just to prepare for this.

My life so far said...

I think the causes of so many chronic disease are multifactorial, genetics, environment, bacteria and viruses, all coming together to trigger the response. I have a friend with endometriosis which has spread to her liver and all over her peritoneal cavity. Apparently it can spread even to the brain and lungs and it reminds me of an auto immune disease mixed with a cancer. Cells in the wrong place at the wrong time doing the wrong thing. At least that's my theory. Theories are one thing, living with a chronic illness is quite another thing. Hope the steroids aren't too hard on you.

Sabine said...

I am so sorry to read this Ellen and I hope that the invasive procedure is at least going to get you off some of the drugs.

Steve Reed said...

I think that plant may be a kind of kniphofia? Would that make sense?

Ugh. Hindsight. I suppose it's probably not very productive to look back that way, but who could help it? I hope restoring the meds has a positive effect.

37paddington said...

when is it osteoarthritis? I am glad you greek doctor seems on top of things. i have been resisting meds, too.