R2Wk48 - When bloods tests turn bad

A mini update from me after my appointment to harvest bloods.
It didn't go well, I have 3 new holes in me, at least 2 decent size bruises and as a last resort we used my right arm again depite the scarring on the vein that the hospital warned me about.
A little word of warning for others, the first nurse saked what I'd had to drink this morning - only a cup of black coffee. I was a little dehydrated .... ME..... the OCD 'drink your water before, during and after and never stop' advocate who sloshes back 3 litres every day -
In my defence it was early in the morning and until I've had my first coffee of the day I barely register as alive, let alone awake of making any kind of sense.
So a litre of water later I'm hydrated and sucessfully stabbed
Now I begin the long wait for them to return from the Pathology Lab again.


3 day weekend here in the UK, live, love and have fun ladies and gentlemen xxx

R2Wk48 - Fun, sun and SNOW in April

This week has been as usual pretty fantastic, lots of dog walks, sunshine and living in general.

There has also been a surprise holiday in my very near future. Lem Girl on tour again, back to Portugal but this time with my friend Phillipa rather than Gareth. Her daughter was scheduled to go with her to her place in Old town Albufiera for 10 days but as things do, plans change and the spot opened up for a girlie holiday. The parking is booked at Gatwick, the hire car is booked so we just have to pack and get ourselves there, then most likely we will spend 10 days with Kindles and Candy Crush and talking very little LOL.

The sunshine continued here in the UK until 5.20pm yesterday when in True ‘British Weather’ style I took the dogs to the park and there was a monsoon followed by snow and hailstones …….. we hid in the hut on the park for 25 minutes while it calmed down then all rather cold and wet went home to snuggle up in out blankets to warm up again. I’m blaming this on Gareth who decided on Sunday afternoon to put a pair of shorts on – he scared Spring away in much the same way as me putting on a dress guarantees rain. I should add this is 'British' snow and hailstones which means that they landed melted and disapeared from every surface - except on Amber-Dog where they seems to like it and hung aorund for a while

Work is completely manic at the moment with me running round like a crazy person on 2 conference calls at once while I try to get to a meeting – to be honest I quite like it when it gets like this as it’s interesting and challenging – thank goodness the cog fog has gone, it would all have been quite messy if it hadn’t.

Friday is once again stabbing day, my month 11 blood results. Lymphocytes on the last lot had made it to 1.06 (lower limit is 1.3) they’ll probably jump a fair amount this month as I’ve had another abscess trying to come up in my mouth (in the same place as last year – at the same time) so the little darlings will have been breeding like crazy to deal with it. No doubt they’ll drop next month once they’ve won their battle and all thrown themselves off the nearest cliff like lemmings as Lymphocytes do.

Apart from that life is lovely and MS free as usual.

Love and germ free hugs to you all

R2Wk47 - 4 day weekends in the sunshine are awesome

First things first ……
HAPPY 2^nd Birthday to The Blog ….. it actually happened over the weekend, I didn’t buy it a gift or anything (well it’s domain name renewal was confirmed) but I don’t think it will notice


It seems unreal that the blog has been going for that long, that the start of treatment was so long ago, that life has changed so much and that so much of life is just ‘normal’ as it always has been thanks to Lemtrada and the wonderful results I’ve had from having completed my treatment.


Two years relapse free, progression free, symptom free – it’s what I wanted from Lemtrada right from the start. I referred to Lem in my first post as my ‘Line in the Sand, the point I was prepared to defend from – MS had got this far and would get no more from me’


The improvements were things I hoped for but I knew were not guaranteed, but they have happened beyond my wildest dreams and remain in place today. Lem really has been my ‘magic bullet’; everything I hoped and dreamed it would be.


I know I’m very very lucky, that my response to Lemtrada has exceeded the baseline expectations, and for that I’m truly grateful. I know that only death and taxes are guaranteed in this life and as with everything in life *terms and conditions are subject to change* but if that ever happens well I’ll go to war again.


Whatever happens from here on – the sun will rise, life will continue and the updates will continue over the coming weeks, months and years to come.


So onto life stuff …..


Easter weekend here is a 4-day affair here in the UK with public holidays on the Friday and Monday which makes for a lovely long break (assuming you take advantage of this opportunity for nice rest. Of course being me; this meant I could cram about 6 days of activity into the 4 days off and get loads done.


We had the annual charity Football do up in Solihull on Saturday arranged as usual by an old school friend of mine with the young boys (the 45-year-old ‘boys’) playing the old men (the 46-year-old ‘boys’). This year it didn’t resemble the accident and emergency waiting room with lots of strained muscles and general lack of fitness injuries that was memorable from last year. Also the ‘young boys’ managed to restore some pride after being beaten last year by the ‘old men’ – they actually won – quite convincingly!


It was lovely to catch up with people that I don’t see from one year to the next. It was emotional as there was a lot of talk about my parents and brother and the past. It was also downright silly in parts with us all reliving our youth and acting like big kids. It also meant that on Sunday morning I was feeling every one of my 45 years and just a little ‘Broken’


Once we got home I spent Sunday snoozing on the sofa and recovering some energy before a day out at the football on Monday to watch Reading beat Rotherham and continue their progress towards promotion to the Premier League.


Needless to say come Tuesday ….. well I’m back at work for a well-earned rest.


MS Status
As usual it’s all terribly dull really, life remains great, no symptoms, no MS stuff, just bobbing along as normal really. I have chased up the results of my Spine MRI that was done on April Fool’s Day but not heard anything back yet – what with the Easter holidays and Europe seeming to be on holiday for 2 weeks I suspect next week I might hear something, fingers crossed that no news is good news.


And Finally
It’s Gareth’s birthday today, we are off out tonight for Epic 2** Michelin food which is most definitely NOT on the diet plan and I can’t wait.


Life is awesome, love and germ free virtual hugs xxx

R2Wk46 - Loving the sunshine - Take that MS heat intollerence

It's been well over 20 degrees here in Sunny Berkshire over the weekend, liberally slathered in Factor 1,000,000 sun cream (gingers and sunshine is never a comfortable relationship) I have walked the dogs (a lot in the mid-day sun), done some light gardening bits, laundry duties (the washing line is out of the shed and earning it's keep). We have had 2 BBQ's with outdoor eating, I've gone the colour of weak tea and it's all been pretty awesome.
The last week has pretty much flown by in a whirlwind of activity. Work has me running at about 1000% with picking up existing projects in flight from people leaving the business as well as closing my 4 previous projects all on the same day (they all closed sucessfully - YAY for finishing things) The new stuff is as always a deeply complex smelly mess that I need to did myself out and to steal the line from BlackAdder - I need a cunning plan, as cunning as a fox who's just been appointed Professor of Cunning at Oxford University ......
The BBQ's over the weekend were trial runs for inviting lots of friends over for home made Korean BBQ. I spent time finely slicing Feather Steak and Pork Fillet before marinading them in blends of soy sauce, seasame, chilli, garlic, and lots of other yummy (but low carb) ingredients. We have a firepit in the middle of the garden table so the everyone selecting and cooking as they want it, whilst all sitting around the pit I'm hoping will be a wonderfully social experience as well as 'filling' from a stuffing our faces perspective.
I even got a dress out over the weekend and wore it for a while before changing into a pair of shorts to walk the dogs (getting my white pastey legs out is a VERY rare occourance)
I'm still in the process of transferring my doctors records so I suspect that my month 11 bloods will be either late of have to be done at my old surgery (which means waiting a week for Basingstoke Pathology Lab to actually get my results back - although only time will tell if The Royal Berks are any better at this)
EDIT
It's now Tuesday ... big oopsie I typed everything before this yesterday and simply forgot to pubish it. Nothing new or exciting just a quick update that I'm an idiot.
Take care of yourselves and each other xxx

R2Wk45 - Month 10 blood results and Spring is finally here

Week 45 done and dusted, apologies for no update last week, I tried to do one a couple of times and realised that in that time my life was so dull in that period I decided not to torture you with it….

The summary of the week before last is ‘work, work, work, handovers from people leaving the business zzzzzzzzzz – dog walking, life good, blah blah blah’

Mother’s day as always was emotional and nostalgic, I still can’t quite wrap my head around the reality that she’s gone, let alone that they are all gone. Gareth bless him was awesome with me crying all over him randomly.

The only real thing of note is that I tried to go back on the Cambridge Weight Plan as slimming world really doesn’t work for me. Unfortunately, after 3 days of waiting for Ketosis to kick in and feel that spike of energy the mental clarity and the boost to my mood I realised it would never happen. Cambridge has more than doubled the amount of Carbs in their products – the nirvana of Ketosis was no longer achievable.

A low carb Ketosis diet works for me, it’s my weight loss method of choice, so out came the carb counting app, the ketone sticks and some wonderful internet resources. Boom – 8lb’s lost (well it’s the first week so most of that is water but I’ll take it) happy me.

The dogs are loving spring and the longer days, the sunshine and just the general upward turn in positivity, they had their first formal meet, greet and play with next door’s puppy yesterday afternoon, Rocky-Dog was a little nervous – they’re only the 2^nd other dogs he’s ever met but he seemed to want to play, so hopefully group walkies at K9PP soon for them all for socialisation and fun.

In other news on the 24^th I had my Month 10 bloods taken and as usual Basingstoke Path Lab took a week to turn them round. My naughty thyroid probably now deserves to be called a ‘reformed thyroid’ I can’t keep saying it’s naughty when that one month of blip has now been followed by 3 months of good behaviour I think. Lymphocytes continue their slow and steady march back to the low end of normal (breed slowly little Lymphocytes – a fully functioning immune system in me is highly over-rated)

The little voice in my head does slightly wonder what changes may happen to my blood and pee results next month as a result of the diet – I will make sure that the lovely Dr C and the equally lovely Margaret know what I’m doing closer to next month’s bloods.

So here it is in it’s usual format for the blood watcher out there.

Enjoy, (the bloods and Spring) xxx

 

R2Wk43 - Looking forwards and a little looking back

 ‘Blog’s’ second birthday is coming up. Blog was born on April 15^th 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 22^nd 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

http://www.wellingtonfarmshop.co.uk/

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

R2WK42-Month 9 blood results

I now have my MRI Spine Cervical booked for 1^st 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