Lucky number 7
It’s 7 weeks since I left hospital and things are ticking along. I’m constantly between having to dig deep to accept where i’m at and be grateful that I’m not more sick. It’s quite the headf**k.
My day to day is unpredictable. Most of my worst symptoms remain at bay but I have fatigue and pain everyday. When I wake up on any given day I don’t know how bad they will be and my gosh do they vary.
I am still on steroids. We (docs and I) had hoped that I’d be off these by now but the medicine (Azathioprine) that was meant to be my way to long term, stable health has failed. My liver couldn’t take the strength of the drug so it’s on to the next one. That means the last 7 weeks have been lost in a medical sense but we move on. Ustekinumab is up next and I’ve got a strong feeling this is the one. I’m much happier with this one as it’s a natural protein already found in the body, we’re just putting more of it in me. These proteins attach to the chemicals in our bodies that cause inflammation and blocks them working. These are being over-produced in my body at present so we need a little blockade. I hope to be starting the Big-U in a few weeks. It can take 2-3 weeks to have any effect and 40% of patients report and improvement in symptoms at that point…hopefully then we can stop the steroids.
While steroids have been great and I couldn’t have got through this without them, they take their toll on the body and can affect mood, weight, hair loss, insomnia and bone density. I need to get off them.
The best thing I’ve discovered in the last few weeks is this - a gene test. I had this done about 8 years ago and the report showed a lot of my critical pathways aren’t functioning properly. This can lead to short term issues like feeling a bit rough everyday but in the long term to chronic and serious disease. From my report I was able to learn which supplements to take to enable or boost these pathways and hopefully limit the likelihood of future issues. The report shows that my pathways for detox are compromised. This directly supports that fact that the Azathioprine drug failed. The body needs to detox from this drug or too much of it will build up and damage the liver which is exactly what happened to me. If everyone was armed with their own report and went in to docs meetings with them, we’d be 100 steps ahead on any medical decision.
I’ve recently done this test for Zigs and Ben and we can now implement what they need. I strongly feel everyone should do this. It’s like unlocking the key to your long term health, hacking your own medical needs and avoiding unnecessary suffering in the future.
We go…onwards and upwards. I’m here, I’m healthy and able to enjoy each day. I hope you are too.
L x