Hi all. Well it's been too long since I posted and my life has changed so much.
This time 2cyears ago I was in a wheelchair and crutches, in pain, fed up and trying to keep doing normal things. I was medically retired from work and was coming to terms with that.
Then I started getting help from an endocrinologist. My weight had ballooned with immobility, high steroids and diabetes with insulin control. He and my rheumatologist worked together...yes...together... to come up with a plan. So I started weight management , no carbs, high protein basically diet, insulin and steroids got reduced. Started Tocizilimab infusions , came off hydrochlorquine ( apparently allergic!) Small note here guys this is individual plan from these doctors it must be medically carefully supervised!
Then as the weight and body chemistry changed they managed to get me off diabetic drugs (type 2) and reduce my steroids. Again all very controlled and over the last 18 months.
So I've gone from being in pain and immobile to having now got off all diabetic type 2 drugs, off high blood pressure drugs, reduced steroids, onto a successful biologic and have gone from 115kg in weight to at the moment 69kg. Still have more to go but see the docs again in October.
I'm writing this for many reasons. Those of you who know me will realise what a changed this is for me and I'm hoping it will give hope to those who felt like I did then. I've never been one to sit around so I did still go to my festivals and music gigs with support and that really helped me.
I feel there is light at the end of the tunnel now where before evety dsy was a slog to even get up or dressed.i can now swim and exercise, before even getting the cossie on was hard.
NRAS have been an amazing support to me all the way since day one of diagnosis in 2011 and I'm so grateful to them. I urge you to volunteer for them, it's hugely rewarding and you learn such a lot.
I hope this post gives you all some hope for the future if you are in the place I was.
And I'll check in more often now lol..been so busy with appointments lol.
Loads of love And hugs A xx