Busy bee

Well this week I have continued with the hospitals apparent big push on what they are doing to me, sorry I mean working in partnership with my care hhhmmm!!!

I saw a specialist hand occupational orthopaedic therapist who hand made new splints that are soft, don't have the metal bar thing, pad out my hands and help my wrists but don't rub on my lumps. Also got a pair of oedema arthritis gloves which are very good.

Then got a steroid jab, phew done relief , I love my steroid holiday, even tho I look like a chipmunk and my blood sugars rise up like a sugar wave!! Saw diabetic nurse, keep increasing the insulin!! Getting away with injecting and checking sugars ok tho, injection much less painful than the RD ones.

Saw my NRAS volunteer for a coffee. We started off bring friends as she is my phone volunteer and happily we clicked and met up as we live very close , obviously we both brought other people for safety reasons, but we have do much in common and now she gets a lot back from me, so in grateful to NRAS for their support scheme.

Next son is looking at houses so we went to look at one I think they have fallen in love with and fell in love with it too!

Then Glastonbury is only 8 days now, so slowly getting the little bits together whilst hubby gets the big heavyweight stuff!! Well excited now and can't wait to see my friends on the disability site and from Attitude is Everything. I couldn't do Glasto without all their help.

Daughters exams finished now too, so slightly less stress in the house lol.

So ..... Pacing ! Mmm! I actually at last think I'm doing a bit better with it. I'm doing a little then stopping , and the steroid and the new Orencia infusion is I think helping a bit! Obviously early days and still got the usual pain and stiffness but I'm feeling positive and keeping a positive frame of mind!

So resting in bed just now with a lovely cup of tea from hubby bless him. So all good in my RD world today ha ha . Hope all of you who are sore today take hope that you have a good day too!! :) :)

10 Replies

  • You have been a busy girl! Your absence has been noted but glad all is mostly well. Enjoy resting up before the fun begins. Envy you, I couldn't even get to a spur of the moment garden centre trip yesterday as I had to drive (h had had a drink at lunchtime) & hands complained so much changing gear turned round & came home, grrrr. Going this morning, h driving, but it's not sunny today so won't be half as pleasant! Damn you RD. :(

  • Yes heels that exactly what my normal day is like !!! Struggling to get out of bed etc so I'm well chuffed to get the steroid jab so I can have a few weeks of less discomfort lol!! I think sometimes I get angry with my Rheumy but he does seem to have my best interest at heart by letting me get some extra input when I need it. I suppose telling him I would have a breakdown if I didn't get to Glasto helped ha ha ha !! But he agrees that he would do what he can and the disabled site will do what they can to make it possible to get there at all. I bet a few years ago before nras and Attitude were started up my festivals days would have been over, thank goodness for viewing platforms x

  • Sounds like you are too busy to be poorly! Glad things are looking up for you. Hope the weather is good for Glastonbury. Clemmie x

  • Hi Clemmie! Distraction is always good for me and helps me control my pain! Do you agree though that the longer you have RA the more you just try to endure and keep going? I think even thinking less about pain as much as possible , I have less days when I dominates my thinking, I just sorta get used to it and find different ways to do. things ? I think this is something that people who have just found out about their RA might find helpful?

  • My you are busy ! So hope you have a good time at Glastonbury. Here's hoping weather is kind to all mind would a mud bath help with joint pain ?? Nooooo it's going to be sunny have fun love me xx

  • Hoping so!!!!! I'm there for quite a while so it's gonna rain sometime!! I prefer it yo the sun as there's no where to hide out of it!

  • So glad you got your steroid jab, I think you were right to get a bit angry with your rheumy, they don't realise that we do need a bit of a life. Full time pain is a drain!! You are a huge inspiration, I so love your positive frame of mind and agree that distraction is definitely the key. Glastonbury will be fabulous for you, should be a bit cooler by then, it's been a right hottie past few days in Devon!!

  • No it has to rain there till next Monday so then it's odds on drier for us!!!

  • Good to hear that you still have the fight in you to get what you wanted from your team of experts. Enjoy yourself and Glastonbury, is your daughter going with you this year or will it be family outing? Do continue with the pacing or you will be k..........d before you get there! xx

  • im going with my friends from Attitude is Everything, Katy and her boyfriend! And my friend who is her boyfriends mum! I have lots of appointments this week. Would you believe my sugars are still high even after increasing insulin every day?? anyway nurse said to up the insulin A LOT more! But getting there i think, thank goodness for the steroid jab lol

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