Week 12 mid week update

Hiya ladies and gents, hope you all made it through the weekend in one piece, and if you didn't I hope you had one heck of a time breaking yourself :-)
I had my second Oxygen Chamber of the week on Saturday (to make up going for 2 1/2 weeks without one) and feeling completely epic again now, the wall has been removed and is now a long way up the road (well further away than this Saturday when I have my next one anyway)
The weekend has been about getting on top of things that we've let slide over recent weeks, the kitchen has been cleaned, laundry mountain has been vanquished, the overgrown jungle that had taken over the garden was chopped down, and now I've come back to work for a rest :-)
Friday is once again 'stabbing day' and 'peeing on your fingers trying to hit the tiny little pot' day set of bloods number 3 being taken, looking forwards to seeing how much the lymphocytes have gone up again, they were 0.35 in month 2 up from 0.09 in month one aiming for being much closer to the golden range of 1.3-4 for back to normal. I've asked will they be doing the Lymphocyte Subset Panel 4 breakdown on the Lymphocyte count, which seems to be done in some places and not in others. Apparently the CD4 count is quite important, although the 'why' of that isn't something I've gotten to the bottom of yet, when talking to the team at Southampton they seemed to think it was only really important if I had AIDS (which on my original screening was confirmed twice as not being the case - YAY I don't have AIDS - twice :-) ...)

Still stressing a bit over the house sale, the builders who we bought the house from have been incredibly slow at actually providing the closures on the planning and deed caveats that were placed on them when they got planning permission for the development and if this keeps up I'll be visiting the office in Hook in person to discuss it with them.
Overall status of post Lemtrada me, all improvements are still there, no further improvements noticed since the last update. All things considered I'm still flying along and ecstatic that I chose this treatment as my first line of defence.
Love, virtual hugs, air kisses and anti-bacterial handshakes for you all
Stay strong
Tracy xxx

Neurologist day - part 2

I got to outpatients at Basingstoke hospital nice and early, parking is an arse, it's a decent walk to get there and the queue in Costa is terrible at the best of times. Lovely to see Dr C she's had surgery since the last time I saw her on her throat, and I made the mistake of saying her voice was deeper .... Kinda sexy though (didn't mention that face to face in case I looked like I was hitting on the pretty doctor :-) and let's face it at my age it might have looked a bit odd)
Apparently she's not read my blog in case I had been critical of my care etc .... Erm NO I think you're epic Dr C and have only great things to say about you lady xxxx
I don't need more meds right now ... Well of course I don't I'm Wonder Woman and yes I'm arrogant enough  to think with the great care I've had and the first line of defence approach use of Lemtrada rather than the last resort one that not only am I winning and will win  against progression of this shitty shitty illness that I will continue to do so if I have to do Lemtrada every few years for the rest of my life - I had been on sticks and a wheelchair transport in April on my last work trip to Italy which was wholly unacceptable as a future means of getting around.
Apparently my pre-treatment MRI was not active disease, maybe this helps if its asleep when you kick the hell out if it then it stays quiet .... Although that said I would advise everyone to try HBOT (oxygen therapy) no matter what - worst case you'll feel nothing or your ears will need syringing so it's comfortable but it can only make you feel the same or better and nothing was ever won without trying :-)
I didn't get poked with the pointy thing (kinda yay .... Apparently the slightly weird part of me was looking forward to the yelping in a masochistic way.... Not entirely comfortable with the 50 shades of grey analogy there since the film was such turd)
Put 4lbs on at weigh in ..... Bev was unhappy with me for being so weak but I've promised to be a good girl this week ..... New start next weigh in Tuesday so damage repair in progress from tomorrow morning :-) Gareth  has been told not to be a bad influence :-) I married him so I can blame him :-)
All in all I feel a bit silly for the nervousness but I knew I would .....
We talked about not getting sick and I said i had been fine, her response was 'well it doesn't wipe,your whole immune system just the annoying bits' and I've been so carefull with my gallons of anti-bac and washing so if you're carefull go for it .... Just wash the germys away regularly :-) I had such massive exposure when I lost my brother 10 weeks ago to his friends and family but I took care. Please don't be scared of living, just cautious of the others in your life xxx
I am EPIC and  MS can quite frankly feck off ..... This is my body, I own it and MS doesn't own me any more I CAN control it, there is no side effect of this I can't own and control either so CHALLENGE ACCEPTED  and ACHIEVEMENT WON let the battle continue because my weapon is better than yours !!!!!

First Neurologist appointment today - Part 1 - Before the appointment

Hi ladies and gentlemen
This post comes to you in two parts, I'm writing this bit now at lunchtime, my appointment is in 4 1/2 hours time and to be honest no matter how well I'm doing, how great I'm feeling post Lemtrada I'm incredibly nervous about this one.
How mad is that ?
I'm doing great, I've seen such improvements to all the symptoms I've had since the 6 relapses in 6 months period of my pre-Lemtrada MS life. Why on earth would I be nervous at all, my neurologist is going to be thrilled to bits I'm doing so well, I'll be poked repeatedly with that horrid little plastic 'pointy / blunt' stick and this time I'm actually going to feel it (YAY - OUCHIES) but I'm feeling quite queasy and it's completely silly - go figure :-)
I finally got an Oxygen Therapy done on Tuesday evening, I did say I hadn't hit the wall going 2 1/2 weeks between treatments, it appears the sneaky wall gently fell gently and unnoticed on me in the intervening time, as I now feel much more like me again :-) Next one is booked for Saturday morning and every Saturday morning for the foreseeable future - better to do it and always feel great than slip gently into being an old MS lady unnoticed.
I've got a weigh in tonight - really not looking forward to that, I've said I'm starting my diet again from scratch because last week and the tail end of the previous one I just wasn't on it at all, visiting Halifax, the 16 hours of driving, wedding anniversary dinner, Battle Proms and the amazing coffee cake I made mean I did not make any diet friendly choices in that time at all :-)
The quitting smoking is coming along .... I've had the odd one here and there, but I'm no where near as bad as I was - every one I don't have is a step in the right direction and I am absolutely not doing e-cigs as an alternative.
So there we go, part one of today's update, I still feel queasy, writing it all down hasn't help me a jot, but if this helps others realise they're not alone / mad as cheese if it happens to them then it serves some good.


Love, virtual hugs, air kisses and Anti-Bacterial handshakes all round
xx

Week 11 mid week update

Blimey - it's August, where did the year go ? It seems like yesterday that it was Christmas and the severity of MS hadn't made itself fully known. Then the new year and the leg issues, the collapsing, needing a stick to stay upright, wheelchairs through airports and of course my sight going haywire unable to see properly or read anything, The Cog Fog where I could barely think straight and the terrifying bathroom urgency.
Now it's August, I've been without those pesky T and B cell parts of my Immune System that Lemtrada bound to and exploded for nearly 1/4 of a year life has pretty much returned to normal and I'm so grateful that if and when I was ever going to have MS, that is is now when something really can be done about it rather than 20 years ago when options were so very limited.
Circumstances, timings and just general bad luck mean that I haven' actually had an Oxygen Therapy since July 18th, visiting family up in west Yorkshire the weekend before last meant I missed Saturday, delays getting away from work and to BMSTC on Tuesday meant I couldn't get there on time and this weekend was 'Battle Proms at Highclere Castle'. Under normal circumstances I'd expect to feel pretty battered by now but to be honest I'm actually quite good (I'm booked in for tomorrow evening - I may yet come out feeling like a new woman and realise instead of 'hitting' the wall it fell gently on me while I wasn't looking)
It was our wedding anniversary on July 30th, we've been married for 4 years now. Traditional gifts include 'fruit and flowers' non traditional 'domestic appliances' - I went laterally thinking on the flowers theme with a painting by Doug Hyde called 'The Engine Room' which depicts the England Rugby team who all have the English Rose on their chest - flowers see - rather proud of me for that one :-). Gareth had been threatening to get me a 'Beer Fridge' which to be fair had it come looking like one of those nice backlit wine fridges would have been well received, not so much so if it was one of those horrid red sign written cubic nasty Budweiser jobs which I might have had to bop him on the head with. I was pretty much beside myself with excitement from the moment I saw the 'Kenwood' Sign on the side of the box. a Proper food processor which will do everything I want and if the blasted house sale and purchase ever completes I'll have a kitchen big enough that it can live on the countertop where it will be used often - I have the meat grinder attachment so I can make my own mince for burgers, sausages, Bolognese sauces etc . I know I'm a quite a lot weird but for a few moments there I genuinely sat there stroking the box and talking to it in my head - I need to get out more :-)
We went for Dinner at The Hand And Flowers in Marlow, 2** Michelin food courtesy of the lovely Tom Kerridge. The only 2** Michelin pub there is http://thehandandflowers.co.uk/about/. We have eaten here a few times at important stages in our relationship. It was the first 'Starred' place we ever went to, we had dinner there the night before Gareth left for Afghanistan in 2012 on his last tour with the Royal Signals and the British Army, and again the night after he got home from Afghanistan as well. It's where we went for lunch after I'd had the 3 day steroid drip last year when I was being diagnosed with MS too (although I didn't appreciate it too much as I'd had 2 lumbar punctures in 10 days and had a vacuum in my CSF and it felt like my brain was trying to detach itself from the inside of my scull and crawl down my spine - incredibly painful and I didn't make it to desert :-( ....) The food as always was beautiful, service impeccable and the experience unforgettable - I highly recommend this place to anyone who wants to save up a little for a very special occasion.
Battle Proms was amazing, great company with our amazing friends, epic planning by us ladies for food, chairs, gazebo's picnic blankets and drinks (1x Project Manager, 1x Financial Controller, 1x Financial Analyst - a day out for a picnic is well within all our skillsets) Lots of flag waving and British-ness with Classical Music, Napoleonic Cavalry Displays, and free cheese, biscuits and pickled onions courtesy of the mobile Branston Pickle caravan. The Grace Spitfire with a volley of shots from a vintage 13 pounder field gun was breathtaking. the main part of the musical schedule was :
200 years since the Battle of Waterloo, the Battle Proms is the only place to experience the ground-shaking drama of more than 200 replica Napoleonic cannons.
Our ‘first half’ finale is the rousing 1812 Overture by Tchaikovsky, performed in true Battle Proms style with a thunderous percussion of cannon fire, serving as a pyrotechnical warm up to our signature piece: Beethoven’s ‘Battle Symphony’.
The Battle Proms is proud to still be the only place in the world where you can hear this dramatic piece performed as Beethoven intended, with the full complement of 193 cannons, plus musket fire and fireworks, providing a unique and breath-taking musical spectacular.
I'm sure  there are better video's people took on YouTube, but mine is here :-)  https://www.youtube.com/watch?v=wxenbTDrNFc


So it's week 11 already, all improvements are holding.no relapse / concerns so far. If I get overly tired (like I did on Saturday) then I get wobbly in my legs and my eyesight goes a bit blurry, but to be honest I think that might just be what tired normally feels like for normal people and I shouldn't ever analyse it :-)
My check up with my Neurologist is on Thursday at 16:15 at Basingstoke hospital, I'm pretty sure a lot of the session with be Dr C poking me with that little plastic thing that's pointy on one end and fairly blunt on the other. Normally my response to that test pretty much anywhere but the upper half of my torso and head is 'nothing or - yes your touching me with it' no definition of pointy / ouchy / blunt etc. just an awareness of pressure inside the 'meat' part of me - random thought - I should probably shave my legs so she doesn't need a machete or a weed hacker to actually find my legs through the forest of hair covering them :-)
I'm sure Dr C will be exceedingly happy with my progress after treatment and how I'm looking after myself. I'm going to ask when I can get back into the MRI machine though .... I want to see head scans with 'the lights' out' :-)
The sun is shining, life is good and I have a lot of things to be thankful for.
Hope you're all taking care of yourselves and each other
Love, hugs and air kisses
Tracy
xx