Lessons learnt

Today's appointment Went well. Not been put on Biologics but I have been put on steroid tablets instead of having huge 160mg injections every 6-8weeks. Will be put on Sulphazalazine if the MTX injections don't improve me (apparently the MTX injections are up to 30% more effective...?) and the steroids will be reduced week on week. If the pain returns then they know the injections havnt worked and they'll add in Sulpha, if I manage to come of the steroids totally then they know the MTX has worked. So, I have a plan, which at the end of the day, is all we want, isn't it? To be heard and to know what the health professionals are going to do to help us. If there is no improvement on Sulpha after being on that, then I will considered for Biologics. That'll be around October. But I'm looking forward  to these Prednisalone tablets 30mgs kicking in! Very positive! We talked about exercises for my hands and fingers, not wearing my splint all the time (taking off every hour and warming in warm water with exercises) and hydrotherapy and Pilates. Was great to look to the future, so even though I'm shattered and achy, I can look ahead with a plan.

The only negative I've taken away from today is the Sero-negative diagnosis. I'm finding it very very very frustrating. My blood tests are all Normal. My X-rays are all normal (actually very pleased about that!) and the nurse saw no swollen joints today. So, today the diagnosis and the pain is based on my honesty. Now, I'm an honest person and my dh (dearest hubby) sees my pain and it's real. Really real. But I struggle with it as I'm a women of fact. Pure fact and I like clear diagnosis, I always did in my previous career and I'm happy with loads of medical stuff that's unknown but for some reason I'm really struggling with this. I not saying that I'm doubting the diagnosis, I have to trust my Rheumy and the team (afterglow, my Mum trusted them all) and they are the experts, I'm just finding it hard. I have had raised inflammatory markers in the past, but it's all normal now. It's just weird how I can be in so much pain, feel so exhausted and poorly and not have any raised markers. I also find RD (rheumatoid disease) very odd...why does it move from joint to joint? Why has it started? 

Anyway, overall whereas yesterday was THE most terrible day, today has been much more positive. Appointment with nurse, was encouraged to have lunch with dh out whilst kids were asleep and safe with FIL and then my lovely Homestart lady came around to help me. We always have a good chat before the kids wake up and then we all made cakes. It was great to do it with her and gain confidence with baking with 2 year old twins! I love baking and I'm looking forward to doing more with the kids in the future when I'm not feeling like leaving the house, they also sat and drew for over an hour. Such contented little people and I'm so proud of them.

So, looking back on the day....I've learnt and re-remembered 2 valuable lessons. 

1) mess doesn't matter. It's just mess and as long as my wonderful children are happy, mess can be cleaned up.

2) Dont sweat the small stuff

Night 😴😴😴