Monday, 31 August 2015

Week 15 - OMFG hell is called moving home

Hi ladies and gents

I once moved 11 times in 10 years ..... I stay in one place with my husband for 6 years and OMFG. WTF  are all men just old big Boys ???? Didn't want to tidy his space with separation issues from stuff he doesn't even know what it does. I am now being greeted at the tip (dump) by name ......( that has to be wrong)

The house move (despite my best project management skills putting everyone in place 1 1/2 hours ahead of of my own shedule was buggered entirely by our three man removal team being two guys and a man with a 'bad leg Who picked up two hours late ....... In order to meet the 13:00 deadline for exchange of contracts, Gareth and I were emptying the shed, carrying stuff and at one point I was helping drag a king sized mattress up a wrongly shaped set of stairs in a cottage that dates back before 1873.
Needless to say there's money coming back and wine and bad leg has been sacked for his 2 hour snooze .....
We had friends over yesterday expecting to spend all day putting the house to rights,but arrived to make some bits neat and allow us our first proper night off in two weeks and yokes did we just a relaxation time with people we love :-) 

It's the first time and will  be the only time I ever put something negative on here. ...... I did so much work I broke myself ..... Proper style ..... By the time it was done, I had cleared the shed, carried boxes and dragged stupidly big pieces of furniture up the smallest set of stairs in Berkshire to make up for, bad legs guys work rate !!!hmmm 

My Balance has gone to pieces :-( I have babbled and talked nonsense and guess what ...... I kept up  !!!!! Yes I'm crashing. It I've worked like a bloody Trojan and I did it !!!!! So screw you MS .... And the horse you rode In on ...I win because u got up, did stuff,even though I'm tired I didn't quit, knew the price 

Everything is MS's rubbish but I worked hard for my great nights sleep because today I fight again and every day beyond that's a bone xx

The house is livable, we can eat and sleep and 'the man who made time made plenty of it :-) xxxx

It's,war peeps ..... Pick up a weapon and fight !!!!
Tracy xxx

Wednesday, 26 August 2015

Putting Lemtrada risks in Perspective

Just a short update - some stats and comments :-)
  • deaths from Lemtrada so far are 2 (two) or .002%.
  • Deaths from Tysabri are 731 or .007% (three times that of Lemtrada).
  • Deaths from Viagra are .1.
  • Deaths as a result of choking on Lego are 57 (I can't find a figure for stepping on Lego and falling and killing yourself but it would be on top of the 57)
  • Severe disability for those with MS who do nothing is 100%. You may not be disabled today or tomorrow, but it will catch up with you eventually how much damage is too much before you say 'enough'
  • Lemtrada is 80% effective in extended clinical trials at stopping progression.
  • Treating your disease aggressively now will keep you from being severely disabled.

Misconceptions about Lemtrada




Something that never ceases to surprise me when people chose and have this treatment is the misunderstanding of what it is designed to do. People hope that Lemtrada will stop the relapsing, stop the progression, draw a line in the sand and say ‘This far and NO more’.
Yes we all hear the wonderful stories of people showing improvement and it’s what we all hope will happen to us but this treatment doesn't come with that promise or guarantee.
Across social media we see so many statements that are frequently made weeks and months after treatment such as those below seem to reflect a misunderstanding of what the treatment fundamentally does.
  • 'I hope the Lemtrada is doing its thing'
  • 'I'm waiting for Lemtrada to make me feel better'
  • 'I'm waiting for Lemtrada to start working'
By the time you leave the infusion centre / hospital after the 5 days of treatment, Lemtrada has bound itself to the T & B cells that comprise part of your immune system and it makes them explode. Within a couple of short weeks in your body Lemtrada has done its job. It's one and only purpose is to do this before it and those dead exploded cells are flushed out of your body via your kidneys with all that water you have been drinking.
From that point onwards Lemtrada does absolutely NOTHING for you physically it's job is done - it's gone from your body and you're on your own now
Lemtrada gives you both a reprieve and a fresh start, it allows your bone marrow to construct new B & T Cells to replace those destroyed by the Lemtrada treatment - this process takes most of the year to get back up to full levels of B&T cells and  for the first time in years your body is no longer under attack. - hopefully the new ones that your bone marrow cooks up will be better behaved and function more normally than their predecessors and not treat your Central Nervous System as a food source.
The steroids and treatment can be hard on the body making the first few weeks post treatment exhausting and feeling like it's worse after treatment than it was before, it's temporary but it's got to be really annoying when people like me bang on about feeling great all the time.
It’s like rebooting a computer that’s doing an annoying thing, you know by turning it off and on again you’ve not fixed it, but you hope the annoying thing goes away for a long long time.
Now it's up to us to do what we all already know we should be doing on a daily basis, not just because we have MS but because we’re people. We know that in order to reduce the general health risks such as heart problems, stroke, risk of cancers, arthritis, dementia, and just the general aches and stuff that happen as we get old there are things we ‘should’ be doing to protect and preserve our general well being
  • Eat healthily – those 5 fruit and veg a day are important to our vitamin and mineral levels. Don’t eat too much red meat, eat more fish especially oily ones which have those lovely Omega fatty acids which are so good for our joints and brain health.
  • Don't do too much bad stuff – booze, cigarettes and anything else you know isn't actually good for you – even if you didn’t have MS you know this doesn’t do you any good.
  • Drink 3 litres of water every day, it really is good for you, it doesn’t count if it’s coffee / tea / fizzy pop – it needs to be the real thing all naked and glorious – just water. Most people mistake what we think are hunger pangs and eat something, when actually your body asking for water, it’s dehydrated but it feels very similar – next time you feel hungry have a glass of water and see how you feel
  • Exercise a little, nobody is suggesting 2 hours in the gym or training for a marathon, just a little of something that pushes you, even non MS people are tired, ache and feel stiff after the first few bits of exercise in many years (think about the state of those friends who’s new year resolutions were to do more exercise / go to the gym and by the end of a couple of days of pushing themselves they’re exhausted and pretty much ruined), that’s normal, embrace it especially if it’s something you couldn’t even contemplate before.
  • Get plenty of fresh air and sunshine, even if it’s just sitting outside with a cup of tea or a glass of water, it really is good for you, recycled air-conditioned air doesn’t really do anyone any good
  • Sleep well so you’re refreshed when you wake up, the exercise and fresh air will help with this, but if you need to try a cup of hot chocolate before bed, don’t drink caffeinated things after mid-day or try a herbal sleep aid if you need to, but sleep is so rejuvenating for the body. If you’ve been getting a little exercise and fresh air it should come a little easier though.
Now this bit is simply MY opinion - do with it what you will.
The quality of the new T & B Cells that are being constructed are probably a reflection of the environment they are growing in, if we treat our bodies like crap then we shouldn’t be surprised when we feel like crap or it behaves badly.
Now is the time for us to take advantage of the lull in the storm – MS isn’t attacking us, and do what we can to improve our own health and wellbeing and protect ourselves against the barrage of things that just generally go wrong with human beings as we go through our day to day lives.
I think sometimes because we have MS we assume it’s the root of all evil and the cause of everything that goes wrong with us. We don’t simply regard ourselves as people, we regard ourselves as ‘MS’ers’ and forget that stuff goes wrong with ‘normal’ people too – every day. They wake up and something hurts or they’re physically exhausted and they think about what they did yesterday, and why that might have happened and treat it as something that happens to them as a consequence of their behaviours / age / lifestyle, as MS’ers we do have a tendency to put it down to MS and stop there.
I've compared Lemtrada to a battleship of a treatment before, battleships sit off shore and bombard a target - it's damned effective but if it bombards and sails away with no support from ground troops to go in and clear the area, make sure it is a safe and healthy environment for the locals to return then nobody would be surprised if perhaps something undesirable happens because only half the necessary work was done.
We are key to this treatment, we have to do what we can to make the environment of our bodies where our new T & B Cells are growing as hospitable and healthy as possible to give it the best chance of them being as healthy and normal as possible, for as long as possible.
There are no guarantees in life, nothing is certain apart from death and taxes, but all this advice about living in a health conscious way applies to us all even MS’ers and while we have a level of reprieve from relapses and progression have an opportunity to look at our health and wellbeing and have a bit of a ‘do-over’ and see what happens. Let’s face it how can a little healthy living and proactive maintenance of the great machine that is our body possibly be a bad thing for any of us?
 
Love and peace
T

Monday, 24 August 2015

Week 14 and everything is great

Hi Ladies and gents welcome to my week 14, I know it's getting tedious or if you're struggling post Lemtrada then just downright annoying, but I really am still doing great - sorry about that if it makes you mad and you want to punch me or yell at me :-(
After being a little concerned about the pesky lymphocytes only going up by 0.09 again this month, the lovely Glenn Scott advised that those of his group who had slow and sure improvement were the ones with the most solid post Lemtrada stability - improvement and no relapses in the long term. This makes me feel much better about the smaller number :-)
The weekend has been insanely busy with preparations for Friday and the big move, the car has been doing round trips to the tip to get rid of huge amounts of crap we seem to have acquired over the last 6 1/2 years in this house and to buy many many packing boxes. We also had fun with power tools yesterday when the great big entertainment unit needed to be disposed of (won't fit in the space in the lounge in the new house) Gareth got to play with the circular saw that has been languishing in the shed. There's something really satisfying about watching something get dismembered in short time (Does that make me sound like a potential serial killing monster?)
I made time for my Oxygen Treatment on Saturday morning to keep those lovely healing super oxygenated red blood cells doing the great work they've done so far. We're also now eating out mostly in the evenings because everything to eat on or cook with is now in boxes :-) on the bright side - NO WASHING UP :-)
To be honest today I feel like I've some into work for a rest :-) Physically I'm tried, all the way to my bones and feel like I'm an old lady, but that is constant bending stretching packing carrying things and staying up VERY VERY late on Saturday night with Gareth putting the world to rights didn't help with that one bit. I can't blame MS or any treatment for that, I can only blame myself and Bacardi :-)
All in all I'm doing marvellously well, even if I'm pushing myself somewhat harder than usual and feel every bit of the effort and tiredness (Bacardi is evil)
Love, virtual hugs, air kisses and anti-bac handshakes for you all
Live well
xxx



Wednesday, 19 August 2015

Month 3 Blood Test results

So here they are the scores on the doors for month 3. Lymphocytes are not going up as fast as I've been willing them to, but I'm okay so that's fine :-)
Slightly different format this month, I've got them all in a spreadsheet now please message me if you want a template sent to you for your own use xx


  Lower Level Upper Level BASELINE June July  August
Blood            
Haemoglobin 120 160 144 146 143 137
WBC Count 4.0 11.0 11.9 8.8 8.8 8..8
Plt count  150 500 289 196 247 280
Rbc count  3.8 5.8 4.67 4.68 4.45 4.31
Haematocrit  0.36 0.47 0.445 0.444 0.422 0.419
MCV 76 103 95.3 94.9 95 97.3
MCH 27 32 30.7 31.3 32.1 31.7
MCHC 300 360 323 330 338 326
RDW 11 16 13 12.8 12.9 12.9
Hypochromic  RBC % 0 2.5 0 0 0 0.0
Neutrophils  1.8 8 8.09 8.1 7.3 7.22
Lymphocytes 1.3 4 2.5 0.09 0.35 0.44
Monocytes 0.2 0.8 0.83 0.44 0.79 0.79
Eosinophils 0 0.8 0.24 0.9 0.18 0.26
Basophils 0 0.3 0.12 0 0 0.00
Liver Function            
Bilirubin 0 21 9 4 5 6
ALT 0 60 21 19 19 14
Alkaline Phosphatase 30 130 51 54 50 49
Albumin 35 50 45 43 43 41
Thyroid Function            
TSH 0.35 4.5   1.84 2.52 2.43
Urea and Electrolytes            
Sodium 133 146 139 143 140 138
Potassium 3.5 5.3 4.7 4 4.3 4.8
Urea 2.5 7.8 3.8 3.9 6.3 6
Creatine 44 97 62 60 64 63
eGFR per 1.73sq m 60 99999 >90 >90 >90 >90

More Week 13 updates

Hi there ladies and gentlemen
I hope life is being kind to you all and that you're looking after yourselves or well looked after.
My month 3 bloods are back with my Neurologist, and I've sent permission for them to be emailed to me, just waiting for the lovely Dr C to confirm they can be sent :-)
Fingers crossed for a lovely big jump in Lymphocytes this month. I will pop that up as soon as I get it :-)


Symptoms / Improvements Update - Had a really stressy day yesterday, helping a good friend with her dog and their behaviour review after the poor boy bit the horrid man who punched him in the head and kicked him in the stomach (personally I think the bastard got off lightly) I was a shaking blithering wreck and its not my dog. All worked out well in the end though, Hardy is SAVED :-)
I didn't get an oxygen treatment at the weekend and didn't make it back in time for one last night so I'm low on the super oxygenated red blood cells again, I feel tired but am carrying on regardless :-) All previously reported improvements are still in place and if there's anything new I've not realised it yet :-)


Eye Update - it's still a bit swollen and gets painful when it's tired, the eye patch has been binned as wearing it under my glasses was not nice, and the 4 times a day squirty stuff I have to put in it seems to be doing it's job. In the interim it does seem to have developed a bit of a 'twitch' that I hope goes away soon so that when I'm looking at people I don't look like I'm continually winking inappropriately at them :-) I'm looking forward to having my contacts back in, my vanity demands I don't wear glasses for long :-)


House update - All contracts exchanged on Monday and the completion is locked in for Friday 28th. I'm now frantically making spreadsheets (I know I can't help myself) of everyone who needs to be contacted / utilities / insurance / booking removals firms / arranging doggy day care and trying to round up an army of willing slaves (oops friends) to help us :-)


Love, virtual hugs, air kisses and anti-bac handshakes to you all xxx

Monday, 17 August 2015

Mid week 13 update

On Friday I had my month 3 blood and pee test's with the lovely nurse who only needs to stab me once, results are due out today or tomorrow but I'll need to get creative on how I get them because the lovely Margaret is on Annual leave this week.
Apologies for the lack of an end of week 12 update, everything went kind of crazy last Friday, after almost no action on the house sale / purchase for 2 weeks, at 13:45 all of a sudden the contracts were exchanging at 16:30. I shot out to the bank to pay for an immediate transfer just in time for the 14:45 deadline - except it didn't happen, Halifax messed it up, then they didn't confess to it, they tried to reprocess it and failed - this necessitated a trip into the bank on Saturday to speak to the manager - As I type it's 10am Monday morning and that money is STILL sitting in my bank account and not with my solicitors - UPDATE It's now 11am - yes I've been constructing this for a while and working as well - the money has left my account - I have yet to get confirmation it's arrived with the Solicitors but that should happen shortly - Completion agreed by all parties as 28/08 WOOHOO we're going to be in the new house by the end of the month :-)
Panicked banking emergencies resulted in missing the vet appointment on Saturday morning for Epileptic beagle with the poorly RIGHT eye (make a note of the broken eye this will become important shortly) It also meant that once again I had to cancel my Oxygen Therapy for Saturday morning while I went into the bank to vent my spleen. Nothing can be done until Monday - WTF ??? I can put my bank card and transfer money to a new person at 3am on a Sunday morning in Guam but on a £25 CHAPS payment there's a 2:45 weekday cut off and everything stops ? Sheer lunacy
I woke up Sunday morning and realised my LEFT eye felt quite sore and bruised (I now make a matching pair with Amber-Dog - between us we can either see or are rather broken) Over the course of the day it began to swell up and get more and more sore and when we went to the hospital this is what it looked like

I didn't know if this was an allergic reaction to something, an infection of some type or if I'd been snoring and Gareth had poked my in the eye (he still maintains his innocence on this point) but the first 2 with a low Lymphocyte count gives cause for concern.


3 hours later when we were being seen it was bigger and more red. I have a scratch on my iris / cornea which is apparently a bit rough and irritating the inside of my eyelid when I blink. Ths solution to this is to close my eye, slap a patch on it and not irritate it too much so here is my particularly rubbish Pirates of The Caribbean impression

Needless to say having gotten home from the hospital at nearly 2am and the patch driving to work - not a great plan so I'm Working From Home today :-)
Symptom wise, no further improvement or deterioration to report from previous updates, as always I continue to feel EPIC MS-wise .... I've got this thing on the run.
Love virtual hugs, anti-bac handshakes and a sinister pirate wink
Tracy
xx