You’ve probably learnt by now, my English blog is not as accurate as the Dutch. You will have to realise that I want to write about living with lupus and antiphospholipid syndrome and the way I integrate it in my life.
I want to do it in a positive way. Don’t cry about all the hospital needles and don’t cry about things I can’t do any more.
But surprise surprise… Life is always improving the quality and impact of my disease.
I started feeling weird, and after a while it got worse, so I called my GP. As always when I need him the most, he is not working due to a short vacation. With my complicated body and health issues it is not very efficient to go to a random GP in my hometown. But after a couple of hours I decided to give it a try due to all the strange signals in my body.
I made an appointment and had to wait a couple of hours in which my complaints get so serious I had to call the emergency number and ask for an ambulance.
The local hospital noticed a shortage of haemoglobin which pointed at an internal bleeding. Normally recognised by the black colour when you go to the toilet… But I hadn’t been there yet!
Next day the toilet was a beautiful colour palette which indefinitely pinpointed an internal bleeding. Not very convenient with plasters. This was my first meeting with the stomach bowel liver department and a prize winner because they checked top-down and bottom-up!
But fortunately, and to sustain a tradition, doctors didn’t find a reason why this was happening to me and sent me home when the bleeding stopped. It took me a couple of days to regain trust in my body and system again but slowly it started working again.
Together with the Dutch Rheumatic Organisation I participate as a patient in the project ARCH and we had an important meeting for finalising the consensus paper. Something we came up with to improve treatment for Dutch patients. Publish the expert opinion so the other doctors can read about their knowledge and use it in their own cases or jump to the experts.
Still not feeling a 100% and still having some troubles with the focus and the workload but the good news is all my medical checks are coming up next couple of weeks. Most important is the appointment with the pulmonologist who also ordered a chest thorax CT scan. Also going to visit the rheumatologist and I hope to get rid of all the medical shit. Well… Yeah, I know that part need some work too
