So the journey continues. I saw a lovely new rheumatologist today who thankfully had spoken to my consultant and had a plan. I wasn't very keen on the plan but it is a plan! We discussed many options - my preferred option of not doing anything else didn't go down very well! Their biggest concern is that without any more drugs my hands and feet will get worse and I will then struggle to walk or use my hands at all. Obviously that is not a choice I want to make. The drug they want me to take is called azathioprine which is quite like methotrexate and can have similar side effects. So the plan is to take a very low dose of steroids (I know I said I would never take them again) just for 2 weeks. If they work then it will be worth trying azathioprine. If they don't work then I won't have to take the risk of azathioprine and we will have to try something else. If I do take it then they will monitor me very carefully with weekly blood tests and I would stop if I get any side effects. I know this is all very complicated and I am feeling a bit bamboozled by it all. But we have a plan!
In the car coming home Paul and I discussed how this has taken us full circle back to the beginning when I was first ill. What a journey this has been! And it continues on. I will be back to regular hospital visits and lots of blood tests. I will need to avoid bugs and carry hand gel! The next couple of months will be adjusting to these new drugs but hopefully I will be sorted by the time of the wedding.
As ever I trust that God is in charge. Jesus walks close to me travelling this journey with me. There is a plan for my life and this is part of the plan. My struggle (as ever) is that I have my own plans and they don't fit with this new plan so I need to adjust my plans. That is ok it just takes some time to get my head around this new normal. Life will be at a slower pace and there will be more saying no to things. More coffee and less rushing around! More accepting that there are things I can't do, certainly for now. More work on contentment - right here right now! This is where I am meant to be and this is my journey.
So the next few weeks will have no definite plans while I cope with any side effects, and visits to GPs, hospital etc..... Then all being well I will be able to have another new normal!
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