Monday, 23 May 2022

MRI bloods and Round 4 preparations and HRT

 So my 4th round of ocrevus has moved forward to Thursday next week, all but 1 of the required bloods have been done (the Lymphocyte Subset levels can't be done locally but have been agreed to be done on the day by the charing cross MS Nurse team) It's also been agreed that this time I can have it without the steroid 'starter' ...... the steroids have always hit me hard, they mess with my bodies temperature control for weeks and on top of my Menopause hot flushes thats was going to be an absolute nightmare - so this time I'll be taking my shot of Ocrevus neat 😎

I've had an MRI this week on my hip thanks to the Spine guy and hope to have news on that soon. 

The next thing its HRT - OMFG - miraculous stuff - slap a magic Conti patch on my arse and suddenly I'm human again - I have energy I feel 'normal' 

I kid you not - I popped it on Saturday afternoon and bang - Sunday morning I woke up refreshed because I've not had hot flushes repeatedly through the night that kept me awake, I walked around Costco yesterday with only a bit at the end where I had to use the trolly as a walking aid - it wasn't pretty - I looked likeI'd been on the gin already with the wobbles and oh my was I slow 😆 but I did it. We popped to Waitrose after that and I did it again walked mostly a little trolly action at the end.

By dinner time everything ached - but then you'd expect that right it's been a good couple of years at least since I did that - and hey I earned those aches 😎

This morning I've had my physical trainer session and smashed it - especially the leg exercises which up to now I've needed up use both hands on a chair to maintain my balance - today I stood next to my office chair and rested one hand on it and did them all without a wobble.

I'm hoping that this is another step in the right direction for me, 

Roll on Thursday, lets get round 4 done and kick MS up the arse again 😎😎😎


Wednesday, 11 May 2022

Spine guy appointment done, diet update and 16 days to Ocrevus Round 4

 Time seems to whizz past so fast these days (I know thats a getting old thing)

This weekend the painter is coming back to do the final 2 rooms in the house that we didn't have done last time. Our new headboard which I swear we only ordered a couple of weeks ago (but I reality was just over 2 months ago) arrives on Friday.

I'm back in for Ocrevus round 4 on the 27th and as a pre-emptive strike my docs have prescribed some 'anti-UTI' meds so I don't fail the test again - I'm actually rather looking forward to it even though I know it's going to wipe out my Covid antibodies and T-Cell response again. Fortunately I don't seem to have the 'crap gap' that others report I just stay the same in the run up and afterwards (crosses fingers throws salt over shoulder and salutes the magpie in case I'm jinxing myself but saying that)

I had a 'day out' yesterday - well a couple of hours at the Royal Berkshire Hospital to see the spine guy. I'd mentioned that it might be related to the Facet Joint Degeneration on the right side of my spine but I'm having problems with my right hip - I demonstrated a couple of things that cause pain and weakness then he had me lay down on the exam table and asked me to lift my right leg ... damned if laid out flat the blasted thing wouldn't move. He lifted it up at aright angle then turned my lower leg inwards towards my left leg - all fine - then he rotated it outwards and bloody hell did I yelp .... loudly which was a double surprise for him - one that it went that way easily because I'm pretty flexible but the yelp hurt his ears.

He's asked for an MRI to be taken of it, he thinks the cartilage in my hip is damaged / deteriorating / knackered in addition to my back problem we know about. I can put that through BUPA at least as it's something new so back to the Rutherford Cancer Centre I go for the MRI and then probably a referral to a hip specialist.

He's really chuffed with the weight I've lost and said yes its definitely the right thing if there's a possibility I need that hip replacing and also just for life in general. 

It's over 2 years and 2 months now since home working became the norm, we get out and about again now but I think the paranoia of the last couple of years is going to take a long time to wear off, I still regard everyone walking around as plague monsters.

All in all, life is good some stuff is happening, some stuff is changing and some stuff (ms) stays the same

Stay safe and well much love from me 

xx

Hip procedure booked, weight loss continues and by heck it's warm

 So first lets address the big hot, sweaty elephant in the room .... (not me) summer is here and the UK is hot hot hot. Now with the high nu...