Wednesday, 30 November 2022

Time for an update another round of Ocrevus in the bank

 So it's been a long time (again) I'm going to stop making hollow promises and just say I'm going to keep updating and won't forget you.

So what's happening?

Well a week ago I had round 5 of Ocrevus - fast infusion and I had the steroids this time too thanks to the nice HRT patches I'm on no overheating this time too. I had the usual itchy throat for a few minutes when they pushed it up to 300 but apart from that all very uneventful. New round is booked in for May '23 so here we go again.

The 5am start to get to Charing Cross by 7am so I can park worked like a dream especially since we're now back in 'normal' times so rush hour is a 'thing' again - randomly there was less traffic in rush hour than there was in covid times for the last 3 rounds - go figure ??!!??

I had my 2nd MRI of the year last month and the report came back as stable again - that means I've now hit 7 1/2 years without new lesions or active ones - YAY go me 😎

I've managed to purchase 1 Christmas present so far which is very rubbish but we will get there. The major stuff like orders for meat / awesome Italian meal for when we arrive in Wales the day before Christmas Eve and of course the Christmas from Majestic Wines are all sorted.

The stomach problems (not an MS thing) are slowly getting better. Changing when I eat has contributed to this - I'm pretty ruthless now about not eating for at least 16 hours before I leave the house so physically it can't happen. Meal sizes are now child size portions to minimise the cramping and bloat that comes with every mouthful. 

The levels of stress and anxiety in my every day life have reduced enormously in the last few weeks. Feeling a little more in control of my innards and being able to trust that I've taken the precautions I need to leave the house without fear of my guts betraying me has been big part of that. I guess all those tests coming back clear helped enormously too.

Gareth, the dogs and Murphy-cat are all doing great and enjoying life. I think we're all looking forward to the long break over Christmas and new year when we can all just relax and breathe (after the great UK road trip) 

Hope life is treating you well much love from me xx

Wednesday, 19 October 2022

The last month - in short

 Seriously I've done sod all except work and live - it's been so beige and normal that I couldn't really think of anything to post - In all honesty there's still nothing exciting.

We had a night over at some good friends house having a lovely dinner and catching up, Gareth's parents have been for a visit for a weekend and life has been normal 

I guess I should say that the recent problems with my stomach continue - whats causing it remains unclear but thanks to the test results going back it's not celiac or colitis and thankfully bowel cancer - we're running through medications and food type for an allergic response that's just turning my insides liquid with every meal I eat - leaving the house has required military planning for the last 4 months - nothing to eat, no drinks but water for at least 16 hours before I plan to go out.

I can force my insides to comply (this was the doctors suggestion to try) I take co-codamol the night before and on the day despite not needing that level of pain relief but that doesn't just stop the squits - it backs me up too which results in pain ........

Eating anything more than the tiniest amount makes stomach swell like I swallowed a football - it's painful and uncomfortable and results in the same messy ending. Investigations continue - I'm sure I won't remain a medical mystery for ever.

I've been into work today for the first time in 4 months - it's almost like it's getting back to normal again. I saw a couple of colleagues in person for the first time in 2 and a half years - surprisingly emotional really since today is the last day for one of them so it's going to be the last time.

Apart from that life and MS has been uneventful - ohhh I had an MRI last weekend - should hear about that soon(ish) not expecting anything life changing - another nothing changes is absolutely the result I'm hoping for.

Next round of Ocrevus is next month on the 24th at Charring Cross - this will be my 5th round of it. I'm even thinking I won't forgo the steroid this time since the magic patches seem to have nailed the menopause problems 

Talk to you soon 

T

xx

Sunday, 18 September 2022

8 years and a week ago today

 It was Friday night Gareth and I were walking round Tesco's in Chineham doing the weekly shop when all of a sudden the world started going dark, I almost knocked my teeth out on the handle of the shopping trolly as my legs gave way and the pain in my head that had been constant since Monday when the 'pop' happened became far far worse.

Of course the Doctors surgery was shut for the weekend by then so we had to call Hants Doc the out of hours service who insisted I got straight to Basingstoke Hospital (that's where Hants Doc were based) I wasn't there long when they put the wrist band on me and told me I wasn't leaving.

A bleed in my brain they suspected - off for a CT Scan straight away and a night in the Acute Care Ward.

When morning came they talked of 'shadows' in my head. They could be bleeds, strokes, possibly  tumours or MS

Did you ever wonder how you could ever hope with everything inside you that it was 'only' MS ??? 

That weekend with everything in me I hoped that it was 'only MS' because that was the one that wasn't potentially fatal.

The next day they talked of MRI's and lumbar punctures - the possibility of Lyme disease while I lay curled up in the hospital bed with all the curtains drawn around me wearing wrap around sun glasses and listening to 50 shades of absolute turd as an audio book

Sunday morning came, I'm still sitting like a mole but the banging in my head is a little less severe than it had been. The curtains around my bed are now pulled back so I can people watch (through those ever so attractive wrap around shades). 

Late morning the attempts to do a lumbar puncture start ......

    -  5 attempts where they missed completely and on one rather spectacular 'miss' they hit the nerve for my right leg and it shot up in the air in an attempt to 'Eric Cantona' the head off the doctor who'd arsed up the first couple of attempts.

Then they give up and decide to send me up to theatre later to get it done where people have more experience at these things 

It gets a bit fuzzy at this point by the time I'm taken to theatre it's probably 7-8pm my back feels like I've Gallen on one of those spiked balls on a chain you see in things like Game of Thrones and now I'm in theatre and I can't remember if they succeeded on attempt 3 or 4 I just remember sobbing and saying yes every time they asked was it 'okay if we try it again' 

I think it was 9pm when they got me back to the ward - they'd said I could go home if I was okay 2 hours after the Lumbar puncture and I was damned well going home. I could take my own pain meds, lie in my own bed with the curtains closed and feel sorry for myself in comfort but the hell was I spending another night in the hospital. Gareth came and brought me home at 11pm.

It feels surreal reliving this by writing it down again ... like it happened to someone else and I guess in a way it was someone else - the other me - the one 'before MS'

I have changed - a lot, there's no denying that. Mostly for the better rather than worse I hope.

Life goes on - so I'll pick up my sword and go to war once more xx

Tuesday, 2 August 2022

Wedding things - ours and other peoples

 Quick update on life, we had out wedding anniversary over the weekend - a very lovely meal was enjoyed at the Italian in Newbury that is now our favourite in the area (for Italian food) 

 We're off up to Scotland on Saturday for a wedding on Sunday - the beautiful Aeleana and her lovely husband to be Micheal. Allie is one of my 'acquired' sisters - well her whole family are acquired really, her brother Steph and mum complete the set. I have my outfit, Waze to guide us for the 440 mile drive and a play list with 32 hours of music on it.

 The dress I will be wearing is one I haven't been able to fit in for over 9 years and I've had it shortened to a cocktail (spelt wrong???) dress length - the 3 1/2 stone of weight loss is really noticeable now 😎

Just got to make it to the end of the week with my sanity intact I guess.

Hope you're well

I've done another video on the tube thingy which shows the changes with the weight loss and the exceedingly long hair - enjoy - laugh at me whatever you need

Take care 

Much love xx




Friday, 15 July 2022

Oh dear - where did that time / weight / pain go?

 Perhaps it's the heat wave, or possibly menopause brain - so sorry I've not posted for a month.

There has been some drama and a trip to Wales involving a very badly behaved and gangrenous Gall Bladder which had to be removed from the bagging area and then huge amounts of antibiotics to ensure there was no infection left. The 4 1/2 hour drive either way was brutal and it took a few days once home to simply catch up on the rest and let the sore shoulders loosen up again.

We've had Gareths parents here for the weekend for a lovely catch up and wonderful food.

I had my injection in my hip, it's been pretty well behaved since then but it wasn't a pleasant procedure and whilst the lovely doctor said I was very brave, sadly she didn't give me a lollipop or a sticker 😂😂

So here in the UK the temperatures are apparently hotter than Jamaica right now - there are 2 ways to tell if someone is British - do we like queueing (yes) and are we complaining about the weather (always) 😂😂 

I think I've previously mentioned in here that I think I was born in the wrong place because like a lizard or a snake I like to be warmed by the sun - I now formally withdraw that suggestion 😂😂😂 what was I thinking ? I'm ginger - I burn on a cloudy day, I'm middle aged, menopausal and have MS - I'm not built for this 😂😂😂😂

On the subject of 'project Tracy' - I've now surpassed 3 stone in weight loss - I'm actually only 3lb's away from 3 1/2 stone now (that's 20.9kg if that's how you recognise the numbers or 46lb if you can't do the stones thing) I'm into my first pair of 'aspirational' jeans easily and if it ever cools down enough for me to get the motivation up I might be into the middle pair too, but it's simply too warm to even try right now 😂😂😂 - It's still a work in progress, but I'm getting there and it's not horrible.

It's our 11th wedding anniversary on the 30th so we're back to the Hand and Flowers for a lovely meal, my new office desk is due next week so I'm having a clear out this weekend to get ready for it. We're up to Scotland on the 6th of August for the wedding of a beautiful lady who I'm proud to regard as a sister - I definitely need to invest in a new outfit and hat for the occasion - it's going to be so good to get together with the Scottish clan, it's been far too long and there are 2 little clan members that I've not even met in person yet.

It's Friday, the weekend is coming, the BBQ's and pizza oven are being put through their paces and life is good.


Hope life is treating you well and you stay happy

Much love from me

xx

Friday, 17 June 2022

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 number of latent Scottish ginger genes I possess this was never a great time for me in the past. To pinch the line from the film Terminator - 'anyone (who's ginger) not wearing factor 1,000,000 is going to have a really bad day' - it really does sum me up perfectly. I burn through Factor 50 in the UK when it's 15 degrees and sunny - yes that sun block you can use on a newborn - no use to this  ginger at all.

I saw the hip specialist last week and had an X-ray taken too. Turns out I have Osteoarthritis in my right hip - the first official arthritis diagnosis although it's been mentioned occasionally over the last few years. Not a surprise really since both my mum and grandmother had it. 

I'm booked for an ultrasound guided injection in my hip next week in Ascot (once the racing is over and done with) steroids and pain killers initially - apparently it should give a good idea where we need to go from depending upon the results.

I'm still losing weight, still working with the Physical Trainer 3 times a week and life remains terribly 'beige' if I'm going to be totally honest. There's not a lot to report on in my MS world, it is what it is and I'm working hard to make it better.

Hope you're taking care of yourself and those you love xx

Wednesday, 1 June 2022

Round 4 done, nearly 3 stone lost and hip update

 I had round 4 last Thursday and as previously mentioned - I had the fast infusion and I had it without steroids this time 😎

It was all really rather uneventful, if I'm honest - no faster than any other infusion because I got there for 8am, but it was 11:30 before they plumbed me in. I had a lovely anti histamine snooze and it was all done

Unknown to me the woman in the bed opposite had requested a heater be plugged in and then pointed it in my direction so when I was done and unplumbed I had the most horrendous menopause sweat and had to sit down for nearly an hour. Can't really complain as the HRT 'happy patch' on my arse cheek are doing a grand job - I've had 2 full on hot flushes in a week instead of the 10-15 a day I was having before the happy patches.

The drive home from the hospital was a windows open, coffee on tap and loud rock music affair, I got home we ordered takeout and by 7:30pm I was fast asleep. All things told the Flush really flattened me - I think I'd have been okay if that hadn't happened, but who knows.

The diet is still going well. I'm now coming up on the 3 stone loss mark. I've lost 2 dress sizes so far and over 30 inches cumulatively. I've still got a long way to go but it's going really well especially in conjunction with the Physical Training sessions - I have muscles - MUSCLES in places I've not had muscles for many many years 😎 we're not talking substantial body builder stuff here, just some visible proof that I'm trying bloody hard to get myself back

I had an MRI last week too on my 'gippy hip' and wouldn't you know it - it's definitely leaning towards the 'knackered' end of the spectrum. The Spine guy has referred me to The Hip Guy (yes I know there's a song about that) so more news on that front a week tomorrow.

I managed to do Costco last weekend with a trolly as a walking aid (Bob was flat so I had no choice) and I was still playing catch up after a day visiting Claire, taking the boys to the park, taking the Pizza oven to her so she could enjoy Gareth's home made stuff from the comfort of her bed.

Life is good, if we had more sunny days and less overcast, cloudy and rainy it would be better

stay safe, stay well, much love from me xx



Time for an update another round of Ocrevus in the bank

 So it's been a long time (again) I'm going to stop making hollow promises and just say I'm going to keep updating and won't...