It has been almost a month since my last post… and a lot has happened!
Firstly, I received both approval and started a new biological infusion treatment three weeks ago called tocilizumab: the results have been rapid and incredible. I am gaining energy and have had minimal side effects so far.
Secondly, since starting the tocilizumab I have also been able to stop taking my weekly methotrexate dosage – this in and of itself has been such an encouragement. As I have expressed in previous posts this medication made me really sick, nausea, fatigued and depressed. It has been so liberating to stop taking it!
Thirdly, we have also been starting to taper my prednisone dosage (this will take three or four months) so it is great to have this process underway.
There is an enormous way to go on the recovery journey but I am so thankful and grateful for the improvements we are seeing each day.
It really feels like we’re breaking through and starting to make some ground. It is also so encouraging to see what type of lifestyle maybe obtainable on this new treatment.
I know what I am about to say may seem paradoxical, but I would be lying if I said the improvements in my health didn’t come with anxiousness and hesitation. I believe these feelings stem from not understanding what is causing the abnormality with my body at the moment and what the potential long-term ramifications of my condition are. The increase in energy and mental alertness I have experienced in the last two weeks has started to bring some normalcy back into my life. I am no longer so incapacitated, trapped in a perpetually sick and exhausted body, that everything seems too out of reach to even consider. I have been able to go out in the last week and not experience rapid exhaustive crashes. I have surprised myself with what I have been able to do. It is both exciting and petrifying. I am so thankful and so grateful for the improvements in my health but I am also really scared of relapse. Still’s Disease, like so many other auto-immune diseases, is so unpredictable. Nothing is guaranteed and that is a daunting and vulnerable position to be in. One part of you wants to excitedly grab hold of the hope that things are only going to get better and better and the other part of you wants to run in the opposition direction because you don’t know how many times you can take the hit. It is scary living in a body that you don’t know the limits of and don’t know how to look after.
In this difficult situation all I can do is trust in Christ’s provision and live each day in a way that honours him. I am reminded of James 4: 13 – 14 “Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”
I think what I am learning is to challenge the ‘negative what if’s’ and to not live in fear. To try new things, test the limits a little, and to move outside my comfort zone. To be smart and considerate of my limitations but to be willing to give things a try. To explore new options and to seek out different ways of doing things. Sometimes we get trapped in the mindset that there is only one way of doing something, but I have learnt that limitation is the greatest catalyst for creativity and innovation.
This period of my life has been crazy hard – but I am so thankful for it. With Christ’s peace, the right attitude and perspective the last six months has been one the greatest gifts and learning periods I have received.