Chapter 43 Keep it up!

Yeah, another month passing by including trips to The Hague,  Normandy, London for the PMI Congress and fun activities but have the feeling that there is not much progress anymore and sometimes that I am even going backwards. It is difficult as it is somehow subjective in terms of measurements. This may be a question of feeling and also how tired I may sometimes be. The treatment is still going on and I feel a difference also when I go to the kinesitherapist, this helps a lot being less rigid and makes walking much easier! I am still highly positive about this therapy and sure we are heading in the right direction.

Am now in my last photopheresis session for May and all is still going fine for me… Even if it is difficult from time to time, it is so great to feel progress and get better and have almost a normal life. I keep enjoying my job, travel, family holidays and all my other activities! I would not have put one cent on this five years ago… As I just explained to room neighbour 15 minutes ago “we are in good hands and get high-end treatments… All we have to do is being positive and courageous so that we keep healing! The other option is definitely not nice!” I am convinced that my mindset keeps helping me…

Having said that, am now at ophthalmologist and apparently I have a cataract that slowly grows… This is another side-effect of the corticoids according to the doctor… No big of a deal right now as my vision is not really affected but on the long term it may indeed mean surgery… But we are not there yet!  No need to worry about this until am not able to write this blog anymore. Funny enough, they never mentioned this before as a potential outcome of the treatment, for sure it is described on the note in the box but if you read all that, I did in a 10 hours flight, you would never accept any of the treatments I get… Almost every single pill is potentially deadly! Spend once some time reading these pieces of paper and get worried…

My monthly visit to the haematologist was all about good as sugar level is getting back on track, all lights getting green and even my hide is improving which is leading to an extra three months of photopheresis. I like those days when you get mixed messages and you get feedback that confirms your feelings. Now I can properly plan my coming trimester which will be challenging on the one hand but also rewarding and relaxing for a couple of weeks! This why I have to keep it up… I have so many people supporting me that I need to keep going, so I will remain the happy energiser bunny!

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