November has been a great month and so professionally and personally. No hickup, no issues and the monthly appointment at hospital was showing it all green beside usual cholesterol and triglycerides that should get better when we halt some of the medics!
I had the luxury to visit part of Norway and also go for a training in Paris on top of my usual trips in The Hague. All went fluently and no health problem… Even the photopheresis is now simply part of the landscape and found ways to retain my productivity despite the 2 half days in the hospital…
This chapter will be rather short as I am currently working on Chapter 50 which will reflect 2015 and also because I do feel better and can re-blog on Project Management when I have some free time. I must say that I feel blessed with the energy I do still have and the pleasure I do still feel being in good shape even if somehow still disabled.
As mentioned here above, I keep increasing skin flexibility and it shows that photopheresis has a positive impact and I still think that we’ll keep it till mid-2016 in order to cure my Schleroderma in full. I am ready for this as progress is obvious and my quality of life has increased accordingly. I can also see next to me in hospital folks who did wait too long and that is not an option for me! I have to get this cured for good… Just google Schleroderma and you will see how you may look like if you do not get an appropriate treatment.
My doctor also offered me the opportunity to help other folks going through transplant by joining an organisation LotUZ and see how to bring it to our part of the country as well and so help the ones transplanted in my region. I must say that I am quite excited by this as my experience may help some people being in front of the unknown and I already do it informally now and if we can have a framework around this, it may help even more folks and ease some processes. I will of course keep you posted about this!
Next appointment… chapter 50