Friday, 29 April 2016

Week 49 - 19 days until Round 2

So sorry my update is late this week, but I'm blaming a tooth abscess which after a week of generic dental pain suddenly morphed into a whopping great abscess around lunch time on Monday. An emergency trip to the dentist was required for a couple of pain killing injections and 'lancing' of the abscess. I really don't recommend this as a 'fun activity This clearly explains why when my bloods were taken last Friday that my lazy Lymphocytes which have been lazing around and not breeding for the last few months had suddenly gone into overdrive. I now have a whopping 2 whole weeks of high dose antibiotics three times a day to kill off the infection.
I've spoken to my MS nurse about the abscess and antibiotics and she's happy we know what's going on and are dealing with it before treatment starts.
Preparations are all in hand for yet another action packed weekend. We are off up to Solihull on Saturday morning, the dogs are being dropped at a kennels for an overnight stay at the place where Amber-dog was born, she might even get to meet her Dad again.
There is a charity football event at Old Silhillians RugBy club where both my Dad and Brother played in years gone by. This is to be followed by a proper 'Old Skool' disco. All proceeds to Help For Hero's which my brother was a huge supporter of and on Saturday it would have been Ian's 41st Birthday.
The closer I get to Saturday the more and more sick I'm feeling. I know it's silly of me to be this way, it's going to be fun and great to see so many friends, my 'acquired' brothers from other mothers, old school friends I've not seen since I actually left school in 1988. But this time last year was such fun preparing the 'Surprise' for Ian's 40th, it was the last time I saw Ian well before he died. It's the last time I could hug him and he hugged me back. It's the last time I told him I loved him and he told me he loved me back. There's so much I wish we could have done together, he would have been so 'up' for this event tomorrow and it just isn't right that we are doing this without him.
In preparation I've been and had my oxygen treatment a day early this week. If I'm going to be a basket case I might as well have super oxygenated red blood cells while I'm at it.
Round 2 is now only 19 days away, so as I did last year I'm ramping up all my preparation activities. the vitamins and minerals, the oxygen and water, the immune system support products. For me round 1 was an easy experience and life has just got better and better for me.
I'm excited to continue my journey, nervous that it's already working what if something changes, whatever happens it will all be here in detail (if poorly written)
Take care guys and girls xx

Monday, 25 April 2016

Month 11 blood results (at last)

Well it's taken 2 holes this month after they didn't do the whole blood count on the first attempt but here we go the scores on the doors for this month are as follows.
The lazy lymphocytes have woken up and are rising again, I might even make the lowest level of normal before round 2 WOOHOO


  Lower Level Upper Level Pre-Lem BASELINE February March April
Blood            
Haemoglobin 120 160 144 142 136 131
WBC Count 4.0 11.0 11.9 8.8 8.8 9.3
Plt count  150 500 289 292 301 313
Rbc count  3.8 5.8 4.67 4.46 4.29 4.24
Haematocrit  0.36 0.47 0.445 0.434 0.419 0.408
MCV 76 103 95.3 97.3 97.6 96
MCH 27 32 30.7 31.9 31.7 31
MCHC 300 360 323 327 324 323
RDW 11 16 13 12.7 12.3 12.3
Hypochromic  RBC % 0 2.5 0 0.5 0.7 0.7
Neutrophils  1.8 8 8.09 6.95 6.86 6.79
Lymphocytes 1.3 4 2.5 0.79 0.79 1.21
Monocytes 0.2 0.8 0.83 0.62 0.62 0.74
Eosinophils 0 0.8 0.24 0.26 0.26 0.28
Basophils 0 0.3 0.12 0 0.09 0.09
Liver Function            
Bilirubin 0 21 9 8 8 6
ALT 0 60 21 17 22 15
Alkaline Phosphatase 46 116 51 44 41 43
Albumin 35 50 45 42 41 41
Thyroid Function            
TSH 0.35 4.5   2.5 2.87 1.35
Urea and Electrolytes            
Sodium 133 146 139 140 141 140
Potassium 3.5 5.3 4.7 4.6 4.3 4.3
Urea 2.5 7.8 3.8 5.2 6.2 6.2
Creatine 44 97 62 75 81 69
eGFR per 1.73sq m 60 99999 >90 >90 81 >90

Thursday, 21 April 2016

Week 48 - The Countdown to Round 2

It's quite strange not updating the posts into the Book version at the same time as entering them in here. I've been doing it for so long now, and if I post edit the book version any more to remove my typo's duplicates and general inane ramblings I'm going to go quietly (or not so quietly) mad.
We had a lovely weekend up in Halifax with Gareth's parents. We went back to the lovely Julio's for a meal on Saturday night, walked the dogs on the park, visited with Gareth's grandmother and saw his nieces. All together an action packed weekend, and the traffic on the 500 mile round trip wasn't too crappy either.
I'm late adding this week's update because I've been waiting for my blood results to come back, strangely despite the Vampiric blood collection last Friday they have only partially returned, I don't have the important bit for the lymphocytes yet. I'm not exactly a happy bunny that I might have to go back to the doctors tomorrow and get stabbed again to collect some more.
On Tuesday it was Gareth's 37th birthday and we are back to me only being 7 years older than him rather than the 8 years it's been since March 3rd which makes me feel slightly less of an old bag. I had the day worked out with a train into London followed by a luxury breakfast at The Delauney for rather amazing Eggs Benedict.
We then went on to not quite so glamorous Tottenham to do a private VIP tour of the Tottenham Hotspur Ground. I'm not a Spurs fan, but I have to say the tour was absolutely amazing, the history and the stories that our guide had to tell were edged with the perfect amount of humour. I had no idea that grounds played such mind games with the opposition by making things uncomfortable in the 'Away Changing Rooms' slippery floors, low ceilings, uncomfortable seating and the hooks for clothing positioned at strange heights. I asked had they ever been somewhere that the hot water for the showers malfunctioned and it raised a chuckle - they now think I'm more evil than the opposition are.
We went out for dinner rather then cook when we got home and discovered another lovely place to eat that's really close to home, just a little village pub but all home made food that is served beautifully.
All in all with the travelling at the weekend, sleeping in a bed that's not our comfy Tempur mattress king size, an active day in London I'm not feeling too bad at all.
I am now 19 days since my last oxygen treatment and my next one isn't for another 2 days. This is the longest I've gone in over a year without having one. If I'm honest I'm aware that I need one, I'm not cog-fog ridden or pseudo symptomatic, it's more a vague awareness that I feel quite 'old' and I know that having one will give me a boost.
I've made it to Thursday, tomorrow I work from home, watch the cleaners do what I simply don't have the desire to do, then off to the doctors for that lovely pre-treatment test that only ladies get to enjoy (and maybe get stabbed again)
The weekend is calling to me and just for once we have absolutely  bugger all planned for it!!!! I can't wait to have a long sleep, get up late and not have to worry about being on a schedule, having things planned or commitments I have to keep. So why oh why am I now thinking 'if the weather is nice why don't we have the first BBQ of the year invite everyone over and have some fun' - well clearly it's because I'm an idiot, a raging hypocrite and have no common sense what so ever.
Situation normal there then
Love hugs and positive thoughts for you all
xxx

Where oh where did my blood tests go?

I've finally got 'part' of my tests last Friday back again, strangely without the blood results. Most strange. The doctors are chasing them down and I'm REALLY hoping I don't have to go and get another one done for April and wait until sometime next week for the results.
  Lower Level Upper Level Pre-Lem BASELINE April
Blood        
Haemoglobin 120 160 144  
WBC Count 4.0 11.0 11.9  
Plt count  150 500 289  
Rbc count  3.8 5.8 4.67  
Haematocrit  0.36 0.47 0.445  
MCV 76 103 95.3  
MCH 27 32 30.7  
MCHC 300 360 323  
RDW 11 16 13  
Hypochromic  RBC % 0 2.5 0  
Neutrophils  1.8 8 8.09  
Lymphocytes 1.3 4 2.5  
Monocytes 0.2 0.8 0.83  
Eosinophils 0 0.8 0.24  
Basophils 0 0.3 0.12  
Liver Function        
Bilirubin 0 21 9 6
ALT 0 60 21 15
Alkaline Phosphatase 46 116 51 43
Albumin 35 50 45 41
Thyroid Function        
TSH 0.35 4.5   1.35
Urea and Electrolytes        
Sodium 133 146 139 140
Potassium 3.5 5.3 4.7 4.3
Urea 2.5 7.8 3.8 6.2
Creatine 44 97 62 69
eGFR per 1.73sq m 60 99999 >90 >90

Friday, 15 April 2016

33 days to go to treatment (again) Happy 1st Birthday LemBlog

What a difference a year makes
365 little days
This time last year thanks to MS
  • I was losing my sight
  • I was walking with a stick and at one point in a wheelchair
  • I had no feeling in my skin except electric shock sensations to 85% of my body
  • Brain fog that made me feel like I had the onset of dementia
  • Bathroom urgency had taken me prisoner for fear I'd have an accident
Today
  • I walk unaided anywhere I want to
  • My eyes have settled back to being just as rubbish as they ever were
  • I have all my feeling back
  • The Brain fog has gone
  • Going to the bathroom as a peaceful thing, it's certainly not terrifying any more.
Lemtrada is the ONLY DMT I've  received for MS since I was diagnosed in 2014 and I credit all my improvements to it giving control of my immune system back to me.
It's not Witchcraft, Voodoo or one of these internet 'wonder-cures' designed to prey on the hopes and dreams of people with MS.
It is simply a fully approved medical treatment for Relapsing Remitting MS internationally that is right now the most effective treatment available for stopping MS in it's tracks.
My first year is fully documented here, it is my personal journey, every step of it. This is more a 'Not So Secret Diary of Tracy D aged 43 and 1 month' (when it started). It's not just my MS, it's my life, and living, loving, the heart breaking loss of my brother and my Grandmother, moving house, my badly behaved dogs, and anything else random that enters my head to be honest
I hope that this gives people considering this treatment a real view of how the first year has been for me through the great, the good and the awful. That yes this is a big deal treatment but it's a miracle too and the benefits far outweigh the risks.
I'm in the process of releasing year 1 in a more user friendly readable format through Kindle / eBooks. Unfortunately I can't do it for free but all funds generated from the sales of it will be donated to the Charity SHIFTMS which has been my saviour, advice line and a sanity saving resource for me and is without doubt the most positive and inspirational group of MS'ers on t'interwebs.
So Roll on round 2
So here is my pledge for the coming year :
MS keep your head down because I know you've learnt your lesson already, but just in case your memory is as faulty as your immune function I'm going to tell you a second time. This is MY body, MY Immune System, you're not welcome here so kindly STFU and Stay Away!!!!!

Wednesday, 13 April 2016

Week 47 - SLOW DOWN TRACY FFS


I’ve been trying to write this for 3 days now and I’ve not posted it yet, it’s been a busy and hectic week for us this week; it feels like it’s been a head long dash from one end of the week half way into the next with barely a moment to draw breath. Monday and Tuesday last week involved a lot of shenanigans of bobbing back and forth to work to be there with our new dog walker for the first couple of walks to ensure she was happy and confident with walking them.
In the lead up to the upgrade of the Forum that Gareth and I co-own with a couple of lovely like minded football chaps, there was a lot of last minute testing, feedback review and the odd heated discussion about how things should work. The main problem with having 2 delivery manager / project managers in the same house is that we both know the best way to do ‘it’ but they are not the same way and we both ‘know’ our way is the better way.
I never made it to Oxygen Therapy on Saturday as by the time we were sure the migration to the new software was in a state that we could sleep it was very late. We had both had much wine and driving would not have been advisable. We drove down to Portsmouth at dinner time as Gareth’s Dad had come down for a few days with the family, it was lovely to see him and Gareth’s Grandmother (the last time we were all together was when we got back from France last year)
We arrived just in time to see The Grand National which as usual I had put my customary £20 of bets on a selection of horses. I had £2.50 Each Way on Rule the World at 50/1- a potential maximum return of £161.24. Rule the world had a decent jockey and had placed well in 2 other big races including the Irish National, so an each way bet was a good shout. He only went and WON the race … WOOHOO – that’s the main part of Gareth’s birthday present paid for!!!!
By the time we got back from Portsmouth I was absolutely shattered I made it through a couple of episodes of Gavin and Stacey and was out for the count on the sofa, I woke up at 2am to discover Gareth still doing things on the upgrade and went upstairs to sleep some more in the bed and left him to it.
Sunday was better, I was up early to walk the dogs (not a surprise after the marathon sleep) then I drove to Wokingham and had a ‘It’s not a baby shower’ lunch with the girls, the boys all got together somewhere else and drank beer – the girls  were far more civilised, a lovely meal and 3 bottles of sparkling water between us.
I went and did some food shopping after lunch to get mostly food for our menagerie of pets – the humans could survive for a while longer. Home and some more rest on the sofa to bring things back into balance a bit more.
I’ve been back in work now for a couple of days but the manic still hasn’t let up.
I met  the lovely Margaret my MS nurse at lunch time for the final checklist of what needs to be done before round 2. In relation to the X-Ray, both the lovely Dr C my neurologist and Southampton have said they don’t need one for round two  Margaret is going to sort out a sealed needle thing for the monthly bloodletting on Friday – my usual monthly bloods require 3 bottle changes which isn’t too bad when the needle is in my arm, however they are also taking the pre-treatment tests which last time required 8 bottle changes – 11 changes would be a nightmare so I’ve asked can the use the needle with the tube attached and the plug in bit at the end of the tube bit so the needle doesn’t have to be held for each bottle change.
Amber dog had another epileptic fit on Monday night – actually it might have been her second as when the dog walker arrived yesterday she had attacked the veg rack in the kitchen. Her fits usually happen twice in 12 hours so I suspect she had one yesterday morning too because they leave her confused and ravenously hungry I guess potato’s, onions and garlic were the only thing she could get at on her own. She's fitted twice this year now and she usually only fits in the summer so I took her to get her bloods redone again in Tuesday night, I have a sneaking suspicion that she may need to have a medication change. Her vet said that she doesn’t seem to be processing the Phenobarbital properly as the dose she’s on is probably enough for a Great Dane.
And finally we get to Wednesday, I’m in the Bracknell office for the next couple of days, which will be quite busy with a quick post treatment trip to the Physio tomorrow to confirm the injury to my shoulder is all fine now (which since it isn’t giving me huge amounts of pain is a certainty, it is a little weak though)Our new dog walker this morning has told us she’s hurt her neck and shoulder but will pop in and play with the dogs in the garden and make sure they’re ‘emptied’ at the usual time. It’s a nightmare, what we really need is someone who pops in at lunchtime and does this Monday to Thursday. I'm not bothered about the 2 hours of dog walking a day, they’re our dogs, making sure they get sufficient exercise is our responsibility and not something way pay someone to do on our behalf. What we really need is this type of arrangement properly to give them the  break in the day  and the human company.
On Friday we are off ‘oop norf’ to Halifax to go and visit Gareth’s family for the weekend, it’s his birthday next Tuesday and for the first time in a long time his folks are going to get to see him rather than posting cards and gifts down to him.
So back to the drawing board for Pup’s, birthday preparations for husband, travel preparations for the weekend, project madness at work and a new ‘personal project’ that for a few weeks will need to remain quiet to see what happens. I never learn, I keep saying I’ll slow down and I never do – can’t teach and old dog new tricks seems quite appropriate for me right now.