Monday, 20 March 2017

R2Wk43 - Looking forwards and a little looking back


 ‘Blog’s’ second birthday is coming up. Blog was born on April 15th 2015 and since it’s been such a big part of my life for the last 2 years I should probably buy it a present, take it out for a celebratory dinner or something (any excuse to go out for a great meal).

I’ve created an event up on SHIFTMS for the M4 corridor on April 22nd for people in the Berkshire / Hampshire area from 12-2 at the Wellington Farm Shop Cafe. It’s just a chance for people with MS to get together, drink coffee, eat fantastic cakes and put the world to rights. If anyone relatively local to the area wants to come and join us (me) then you’re very welcome to. It’s very easy to find coming of Junction 11 of the M4 and hopefully I won’t be sat on my own like Tracy-No-Mates for 2 hours looking sad and lonely.

Wellington Farm Shop Café - Welsh Ln, Reading RG27 0LT


Week 43 all done and dusted. There are now only single figures of weeks remaining until I can say I’m a year beyond Round 2. It all seems to have gone by so very quickly, it seems such a short time since I was preparing to go in for round one and starting this blog but it’s been nearly 2 years. So very much has happened in that time and it seems almost incomprehensible that it can have been so long when it seems to be such a short amount of time.

I know it’s gotten incredibly boring that life and MS remain ‘normal’ but the joy of the normal never gets old for me. I went for Oxygen Therapy on Saturday morning and it struck me that there were so many people with MS there that I have seen ‘progress’ with the disease over the course of the last 2 years. Some are SPMS or PPMS, but others are RRMS who are on other treatments (which to be fair for the most part they are happy with) but for me the MS Clock has not just stood still, it’s rewound to the indeterminate point somewhere in 2012 before MS Symptoms first started appearing in my life.

It would be another 2 years before my diagnosis. My diagnosis happened suddenly after the terrifying brain haemorrhage / stroke / tumour scare triggered by a bout of Viral Meningitis. Diagnosis allowed me to piece together a whole host of things that individually I had been ignoring as ‘getting old stuff’ together into a pattern of how MS had sneaked into my life like a thief in the night-time taking a little here and a little there.

I remain completely happy that I chose Lemtrada as my first line of defence against this MS nonsense. It really has not just stopped my MS in its tracks (what I wanted it to do) it’s shoved the MS back up the road it came from substantially giving me improvements all round (which while not guaranteed is the bonus prize we all hope for with Lemtrada).

I’ve had my moments, my scares and worries which I’ve posted in here as they happened. My irrational ‘what if’s’ and general ‘blondeness’ are all here in the hope that if they can help someone who is reading this then I’ve done my bit to ‘Pay It Forward’ to the MS and Lemmie community who were so awesome when I was still so very green and nervous and looking for help, reassurance and someone to talk to.

In other news this week has been work, dog walking and just relaxing a lot. We went out on Friday for dinner at the Awesome Korean BBQ in Reading again because I felt like a lazy mare and couldn’t be bothered to cook. We had good friends and their children over for dinner on Saturday and between Gareth and I managed to put on a fantastic meal.

Life in my weird little world remains awesome xxxx

Monday, 13 March 2017

R2WK42-Month 9 blood results


I now have my MRI Spine Cervical booked for 1st of April – Aprils Fools day ………. Make of that what you will LOL…….. I’ve dropped a mail to the lovely Dr C to query that it is just an MRI and no contrast has been requested – seems a bit pointless to do it without contrast – how do they check the lights are off without contrast?? More to follow no doubt.




EDIT : Neurologist came back to me on email with the following response :
I will request with contrast if any new lesions seen. if no new lesions then no need for contrast
Looks like I don't need yet another new hole in me this time - YAY for less holes in me!!


The past week has been fairly quiet and uneventful to be honest, after the last couple of weeks of being under the weather and birthday and ‘stuff’ it was very welcome. I’m actually feeling really good right now, I’m taking my Turmeric regularly rather than as and when I remember and I feel far less ‘creaky’ than I have done of late.

After Storm Doris wiped out our garden fences they have now been replaced with lovely picket fences which won’t turn into parachutes in the wind any more. The fence that nearly squashed the lovely sporty car belonging to next door is repaired and once again life is ‘upright and dog secure’ in the back garden.

So it’s that time again ladies and gentlemen. The blood results are in (bizarrely not the Potassium though)

There are a couple of red this month slightly above the upper limits, but bearing in mind that trip to the Royal Berkshire A&E a couple of weeks back with the chest pain and breathing problems when the doctors concluded that it was a chest infection and muscle strain from all the coughing – well I suspect those red bits are proof they were right and I was worrying myself for no reason with the MS Hug suspicions.

My naughty thyroid seems to be continuing behaving itself and no longer high although it seems to be working its way down now so tonight I think I’ll have some broccoli with dinner and see if I can nudge it a little in the upwards direction again (but not too much)

I’ve actually finally gotten round to trying to transfer my doctors’ records to the one where I now live (assuming we get the council tax bill through in the next few days so we actually have a ‘real live bill with both our names on’ …..) passports to show we are real live British citizens and probably a limb or an organ to hold as some sort of ‘deposit’ …… all a bit of a faff, but it’s so long overdue that it’s the price I have to pay.

We have friends coming for dinner at the weekend with their children and for once Gareth is up for cooking the main course …. I just have to sort out starters and dessert. We are looking forward to having them over, I’m sure the kids will have the time of their lives snuggling up with the dogs and the cats.

Life remains fantastic and to all intents and purposes ‘normal’ and long may it continue xxxx

 

Tuesday, 7 March 2017

R2WK41 - my MRI results are in and it's GREAT NEWS


I GOT A NEDA
LALALALALALALALALALA
NO EVIDENCE DISEASE ACTIVITY
TAKE THAT MS
Well thank goodness for that, after the worry of the last week with the hospital, chest pains and breathing difficulty I had come to terms with the possibility that potentially there had been some activity. I had even been and checked out the costs for Mexico and Russia in the event that I needed to move the next phase of war. Fortunately, I can now put that back on ice again.
It would seem the doctors were correct and that it was simply an infection and I'd pulled some chest muscles coughing with the vile infection that Gareth had given me - anything more sinister would have shown on the MRI
The lovely Margaret my MS nurse sent me a message saying the MRI results are unchanged from last year

  • No Evidence Disease Activity
  • No New Lesions
  • Existing lesions less pronounced than before treatment

Please excuse the stupid childish font, but quite honestly this and that I have won the jackpot on my own for the Euromillions are top of my list of news I would like to receive.
I’m still awaiting my February blood results and hope to publish them later this week – Lymphocyte and naughty thyroid updates for those who are that way inclined.
In ‘real life’ the last week has been lovely. Last Friday was my birthday – I’m now officially 45 although my stage-age remains 27 years young. I woke up to cards and gifts and more adventures in gastronomy for later. Gareth took me to L’Ortolan again for Michelin starred dinner and we took a taxi home so we could both enjoy a glass of wine.
The weekend was gloriously plan free so we could just relax and enjoy it. On Monday (apologies I know I’m a day late publishing this week) the lovely Nino and his brother Franco started repairing our fences post Storm Doris. They both worked so very hard yesterday and already it’s looking so much better. Another couple of days and the precarious internal fencing for the garden will all be replaced with picket fences and look lovely.
The plan for this week is to relax lots after tonight. My birthday presents to myself were 2 tickets to the Reading v Newcastle game tonight at the Madjeski Stadium – in the away end so I can actually support my own team for a change. I’ve fished out my Newcastle shirt and checked it still fits me and I’m more than a little excited. Gareth as a Spurs fan will just have to endure the torture but hey ho he will cope.
Parking for the stadium and the walk to and from is going to be ‘challenging’ (hence the plan for relaxation afterwards because it WILL hit me hard - and then there’s the matter of our seats being in row Z – basically halfway to the moon ………. )
It will all be good even if I am somewhat conflicted watching ‘my team’ play ‘my local team’ and actually having to choose a side …. (it’s going to be cold tonight perhaps I could wear my Reading shirt under my Newcastle one as layering?)

Onwards and upwards ladies and gents xxxx