Wednesday 5 August 2020

It's be a long old few weeks

Hair update - I'm no longer pink or silver or a strange combination of pink & silver which came out electric lilac

Just Ash Blonde now albeit significantly longer than when all this Covid Lockdown stuff started and I finally dared to 'come out' in a video.

Can't quite get my head around how 5 months have just disappeared from the year it seems like such a short time overall, but it obviously isn't and has been incredibly hard and has taken such a toll on so many people, lives and families.

Anyway here we go scary movie time (it's just a short one)

Bad Bad Bad Tracy - Neurologist appointment and Wedding Anniversary

First things first

Profuse apologies for 4 weeks of no updates. I'd say I was busy or out or doing something terribly exciting ...... but lets face it, if I said something like that, you'd assume my account had been hacked because my lack of exciting life is simply a fact of my boring life.

So last week was our wedding anniversary - 9 years and we're both still alive, not in prison and haven't recently had a patio re-laid :) (MANY years ago, there was an English TV show called Brookside where the husband ended up buried under the patio - hope this helps if you're not from the UK or even if you are and aren't ancient)

We had a long leisurely lunch at the Hand And Flowers in Marlow (as usual - I know but we love it there) did a couple of errands on the way home without stress because we had a lovely lady here keeping the dogs company. Four continuous days off though did make for only 2 'constructive' days because the other 2 were horrid hangover days.

I had an email last week telling me my neurologist appointment at the end of the month had been brought forward to August 5th at 10:30am .... it optimistically asked me to go to St Mary's in London for the appointment which I sceptically thought 'okay yeah lets see' to upon reading, naturally 2 days ago I got the follow up Text Message saying 'under no circumstances try to attend in person - stay home we'll call you'

This morning at 10:30 on the dot ... ring ring ... lovely lady to make the preliminary arrangements for Ocrevus .... I'm getting an email later so I can book my bloods - I really do have to go to St Mary's for that - then once the results are back next call will be telling me when I go to Charing Cross for infusions.

I'm quite excited that it's actually going to happen - something to address the PIRA I'm experiencing despite Lemtrada working perfectly to stop the active disease the old stuff started bubbling again and needs a slap

The wonderful MS Doc Aaron Boster describes it so much better than I can - I've dropped him a DM on Twitter asking for permission to share his video's but didn't hear back - Dr B if you're reading this -- sorry and hope you don't mind xxx

I'm having a bit of a 'resurgence' right now, the arthritis pain in my knees had got to the point where I didn't know what to do with myself so I've gone up to 4 of those monster turmeric tablets each day, a huge dose of Glucosamine and a separate huge dose of Chondroitin - the inflammation and pain levels are reducing, today I decided not to take a pain killer this morning and so far that's been the right decision

Kick Arse

The dogs are still loving the humans working from home - it will have been 5 months on the 9th of this month since the decision to come home and stay home was made. We're working on building up time away from them now so that 'when' we go back it's easier for them.

So that's me

Apologies for the absences, I'll try not to be so rubbish

Hope you're having good days and better days

Today is definitely a better day xxx

Far too long between updates (again)

 So what have I been up to in my long absence and how have I been ? Well the Crohn's is under control and back to how it's always be...