Monday, 28 December 2015

Week 32 Christmas time and family

It's Christmas week again, it barely seems like a few weeks since this time last year. It's true as you get older time flys past much faster, as a child it seemed like forever between chistmas times, the time at school seemed between holidays seemed to be forever when it was only 6 short weeks and birthdays took a lifetime to happen. Now at the ripe old age of 43 it seems to rush past so very fast, one thing is just done before the next is upon me and everything that's happened seems like yesterday.
The whole year has been so frantic, such good things happening because of Lemtrada and all those horrid MS symptoms disappearing, my beautiful friend Laura marrying her handsome David, her hen do in Las Vegas in January then being one of her bridesmaids on Valentine's Day, then the news that they are expecting a baby a few weeks ago - I can't tell you how happy I am for them  both and am already planning for lots of 'favourite aunty Tracy snuggles when the little one comes.
The year has also brought such heartbreak losing my brother a week after my lemtrada treatment at the age of 40, and then my grandmother in such quick succession on the back of losing my mum. So much heartbreak leaving me the last of my parents family line.
I've now added their names to the Christmas decoration that has the names of my mum, dad, Gareth's grandfather and his uncle, to lose so many in such a short time has been devastating.
But it's Christmas time to celebrate the love we have with those we love. Gareth and I are in Wales with my mums sister and surrounded by 5 dogs (2 of ours, 2 of Kathys and a guest dog for the holiday period and on Christmas Day a sixth dog ..... The humans will be outnumbered 6 to 5.
Christmas Day was lovely, very relaxed for me but we had overdone it a little the night before with wine, brandy and some whiskey ..... Not our best plan.
Boxing Day was equally relaxed apart from a second emergency trip to the vets for Amber-dog, she's eaten something nasty and got herself an infection and temperature and has been throwing up and trembling. A nightmare trying to get to the vets as the bridge in Machynllath was flooded out in the heavy rain and storms resulting in some serious diversions.Yet more antibiotic injections, anti sickness injections and tablets for another week for her (it's cost £163 and £183 for the two emergency treatments but at least it will mostly come back through the insurance)
So it's now the day after Boxing Day, we've travelled 3 1/2 hours cross country to Halifax (avoiding the terrible flooding in Balla after the storms where the lake breached) to see Gareth's family for a couple of days before we head home again and rescue the cats from the Cattery  (cue another £180 bill) it will be lovely to see everyone for a few days, catch up exchange gifts and just relax some more. There's been terrible flooding here in Yorkshire too, they might have to rename Sowerby Bridge to Sowerby Aquaduct and Hebdon Bridge to Hebdon On Sea, we saw barges all washed up on top of each other on the way here :-(
My last oxygen was the Tuesday before Christmas, we've walked loads talking the dogs out up and down hills - everyone got to see my leg tremor in full force for the first time going up one of the hills .... Kind of freaked them out a bit mostly fear I think at the thought they might have to carry me back along with 5 dogs LOL it's just tiredness from all the exertion of the last week, a couple of nights of good sleep and I will be back on form - might also see if I can sneak in an oxygen up here if Leeds is
open and has.a space for me. Still as ever feeling epic, totally grateful to have the treatment and all the good things it's brought for me.
I hope everyone had a great Christmas (so sorry if you're one of the people who's Christmas has been FUBAR'd in the UK flooding over the holidays, the forest fires in Australia or the Tornados and flooding in the US, I hope that soon life is sorted again.
Much love, healing thoughts no positivity being sent your way xxxx


Tuesday, 15 December 2015

Month 7 blood results

As it's getting so big now I've hidden the first 4 months results so it fits on the page properly, The full spread sheet is uploaded to the files sections on both the UK and Ireland and the World Lemtrada groups on Facebook :-)
If anyone needs help getting their results into a nice easy to see format please drop me a message, I'm glad to help.


So the Lymphocytes are rising again (probably because I've been completely off my diet and enjoying wine :-) .....)
I've also got the winter lurgy so my body is fighting that right now ..... my conversation with my MS nurse this morning by email went like this :




Am I feeling better - LOL …. Now that’s an open question J
Yes I feel better than I did on Friday The pressure in my ears has gone completely (TFFT) – the never ending stream of snot seems to have dried into a cement ball behind my eyes which has resulted in a never ending headache made worse by the coughing and sneezing which rattles the cement ball around in my head. Oh and those gland’y things under the chin ….. like a pair of golf balls J
If there’s a bright side to having MS and an over active immune system it’s that I’m almost NEVER sick – I had chicken pox in 2003 but that’s the last time I ‘caught’ something – to be honest I think it’s is self-inflicted – burning the candle at both ends and in the middle a bit – staying up too late, wine, sitting outside with an iPad, wine, cigarettes in the cold etc – body has just decided if I won’t slow it a little then it’s gonna make me
I’m an appalling sick person -  because it’s so rare I moan about it constantly and want to punch things J xx


My MS nurse is awesome :-)


Anyway here they are - Lymphocytes now at a MASSIVE 0.88 at month 7 post - woohoo go Lymphocytes - but slowly :-) not concerned about the other bits that are a little elevated - lurgy fighting takes a little 'more'


  Lower Level Upper Level BASELINE October November December
Blood            
Haemoglobin 120 160 144 136 141 130
WBC Count 4.0 11.0 11.9 7.3 8.3 9.8
Plt count  150 500 289 255 269 263
Rbc count  3.8 5.8 4.67 4.27 4.48 4.32
Haematocrit  0.36 0.47 0.445 0.414 0.434 0.417
MCV 76 103 95.3 97 97 96.5
MCH 27 32 30.7 31.9 31.5 30.1
MCHC 300 360 323 329 325 312
RDW 11 16 13 12.8 12.5 12.5
Hypochromic  RBC % 0 2.5 0 1 1 3
Neutrophils  1.8 8 8.09 5.69 6.72 7.94
Lymphocytes 1.3 4 2.5 0.73 0.66 0.88
Monocytes 0.2 0.8 0.83 0.44 0.5 0.59
Eosinophils 0 0.8 0.24 0.29 0.17 0.2
Basophils 0 0.3 0.12 0 0.08 0
Liver Function            
Bilirubin 0 21 9 5 5 5
ALT 0 60 21 14 15 14
Alkaline Phosphatase 30 130 51 46 44 49
Albumin 35 50 45 42 42 40
Thyroid Function            
TSH 0.35 4.5   2.28 3.3 3.4
Urea and Electrolytes            
Sodium 133 146 139 143 139 147
Potassium 3.5 5.3 4.7 4.6 4.4 4.3
Urea 2.5 7.8 3.8 4.2 5.8 3.2
Creatine 44 97 62 46 78 63
eGFR per 1.73sq m 60 99999 >90 >90 >87 >90

Monday, 14 December 2015

30 weeks - I've got my Winston home - and a cold


30 weeks and going strong

Good morning ladies and gents, I hope you all had a great weekend.

First things first – I’VE GOT MY WINSTON BACK :-) he’s still Winston but so much more attentive, calm and well behaved. He now walks beautifully on the lead, his feeding routine, commands and play are all different and we need to practice hard with his to make sure that all the last 4 weeks hard work is built on and not neglected. He’s now whistle trained so I’m hoping that he can go off lead and know he’s going to come back to us.

Since last Friday I’ve been full of cold, my sinuses and ears have been horrid. Being honest with myself, I’ve brought this on myself over the last few weeks, I’ve overdone things, burnt the candle not only at both ends but a little in the middle too. Three days of Berocca, Paracetamol and some serious rest and I’m now feeling a lot better. As usual it didn’t stop me doing anything it just made it more difficult.

I’ve learnt a big lesson this weekend – Oxygen Therapy and a head cold are not compatible – We got to 20ft and my ears were agony it hurt so much. Fortunately my fellow gas chamber people have seen this happen to people before and so had the Operator, they slowed the descent down and kept checking on me. We finally made it to 33ft, my ears felt like someone elses fingers were wedged in there and I was profoundly deaf but at least the awful pain had stopped. When the chamber re-compressed it felt like Snap Crackle and Pop were having a party in my ears with about 30 of their friends :-) By the time it was fully back to normal pressure it all calmed down, my hearing had returned and the popping in my ears had stopped, I did feel my usual great afterwards – well apart from the clogged sinus’s and the blocked ears :-)

Month 7 blood test and peeing in a bottle happened on Friday so I’m expecting my results shortly. I will publish them here there and everywhere. I suspect the results this month will be quite funky what with the cold and everything so I’m not going to worry too much about which way they go.

A grand total on ZERO Christmas presents were purchased over the weekend – total season fail :-( That officially leaves us with one weekend (which we’re back to Tunbridge Wells for Training with Winston Saturday – double booked myself so I’m going to have to rearrange Oxygen Therapy.

Complete Tracy Fail.

I refuse to get wound up about this …. I’m off to Amazon Prime to go hump that free delivery that I inadvertently ended up with because I forgot to cancel the 30 day free trial :-)

Monday, 7 December 2015

29 weeks and considering roller skating EEEK


Week 29 already and it’s going so very fast. It took most of the week to recover from last weekends over exertion, but by Friday I was back on form again. Amber-Dog spent the day at the vets again having surgery on an ulcer on her left eye treated so that’s both eyes done in the space of a month. I’m rather hoping the claim to pet plan gets paid quickly this time as another £200 bill just before Christmas isn’t ideal.

I sat outside for ages on Friday night reading a book and oh boy did I pay for that on Saturday morning, my left hip seized to completely. I couldn’t lie down, sit down, stand up or make any kind of movement without being in the most excruciating agony. My pain tolerance is pretty high – I’ve broken bones and not had them treated for days, but good grief this was something else Gareth was gobsmacked when. I relented and took one of my remaining stash of CoProxamol for it (distalgesic) it’s the only pain killer that ‘really’ works on me but since it was removed from the prescribed lists globally because people had been using it to take their own lives it’s incredibly hard to get. Finding a doctor willing to prescribe it is hard, a pharmacist who’s willing to issue it is even harder. I now have 7 left of the 100 I was prescribed in February 2010  - time to start seeing who I can get the prescription from (I’ve found a pharmacist in Halifax who’s willing to dispense it) I’m hoping Dr C will write it up for me when I see her in February.

MS wise everything remains on a nicely even keel, no symptoms surfacing, all remitted symptoms remain gone and life is lovely and normal for me.  I’m even contemplating getting my roller skates out of hibernation when Winston comes home on Sunday so that he can have a proper run in the park instead of a stroll around it at my natural speed. Definitely need to practice without a dog first to see if a) I can balance on them at all, b) if I’m likely to kill myself in the process c) what my energy levels are like - I can’t think of anything worse than getting a long way from home or the car and not being able to get back. You must think I’m an idiot contemplating this after I pretty much broke myself last weekend and the one before overdoing things, but if you don’t ask you don’t get and if I try and the answer for now is no – well I’ll ask again another time and keep trying until the answer is yes.

We now have a total of 2 Christmas presents purchased (managed a whole ONE gift over the weekend) At this rate we might be ready for Christmas by next summer :-( On a bright note I’ve not only remembered my Sister In Law’s birthday this year, I’ve sent a gift and card too which should be arriving on time. My brother if he could, would be phoning my husband and asking who I was and what I’ve done with Tracy as I’m clearly an alien replica of myself which is more efficient than the original :-)

First Christmas without any of my immediate family this year, off to Wales to spend it with Aunty Kathy for the first time in many years (I think Christmas 2003 was the last time) Looking forward to some serious down time with loved ones very much.

Hope everyones plans for the holiday season are progressing with more success than mine. Stay well

xx

Tuesday, 1 December 2015

28 weeks and going strong


This week should be called ‘The things you do and The Price you pay’
In hindsight driving up to Birmingham Thursday night was a fantastic idea and a terrible one all at the same time
Fantastic because we were on the door step for the show and no need to get up at a time that’s only respectable if you’re still partying from the night before
Terrible because we both treated it as a night to party which involved far too many extortionately expensive cocktails, a very late night and a hangover in the morning.
When going to a food a drink show with many lovely tasters on offer and lots of walking to be done, having a hangover is a distinct mistake – It was probably early afternoon before I felt human enough to appreciate all that was on offer. By the end of the day though I was pretty badly busted – my back and hips were in terrible pain – I put this down to the fact that I’m a lazy mare who spends my life sitting on my considerable arse and am simply not used to being on my feet and mobile for that length of time at all. It was a very long slow walk back to the hotel to collect the car and move to the St John’s in Solihull with some much needed pain relief and a long hot bath.
Friday night at the St Johns with Aunts and Uncle, Sister in Law and her mum was a nice get together before the furtive sneak onto the golf course on Saturday morning. We only put Nana’s ashes where we had put Mum and Dads (Mum was still there 18 months on and I could still see where she was – I had a little chat with her – contrary to popular myth it actually takes a really long time for ashes to disappear it’s not all romantic floating away on the breeze like it is in films) Karen has told us that Knowle Church where my brothers funeral was held can put up a plaque for him if his ashes are there with it. There was no way Ian was leaving Knowle – he loved it there, his life, friends and work were there, it seems right and fitting that since you couldn’t get the boy out of Knowle he is immortalised there forever hopefully out the front where he can see the pub and his friends can wave to him on the way past.
We had a nice drive up to Halifax and arrived at lunchtime, great to see the family and catch up but a very short visit and we need to have a decent visit up there at some point. Steve’s homemade Burrito’s for dinner – YUM YUM I sat drooling while he was cooking and by the time it was ready to be served I’d happily have gnawed on my own arm.
Sunday was the long drive back home again, not too bad, a new route through the midlands courtesy of the traffic management sat nav thingy but home in time to collect Amber and be there to receive the shopping delivery (thank goodness for online grocery shopping – we would probably be feral by now if that wasn’t an option)
Monday I made it to work, but that’s really as good as it gets, I had what I thought was a headache most of the day and when it got to 15:30 I decided to throw in the towel and head home – finish the day from the sofa. I stood up and the world tilted sideways – BOOM – guess what Tracy – It’s been 15 months since your last one, but HERE’S MIGRAINE. I made it home and slept off the worst of it but oh boy was that one a surprise. I’ve known for weeks that I was going to pay a price for the weekends activity, it’s not a surprise at all, it’s not the treatment or a relapse, it’s just overdoing it and I need to rest up and get myself back on an even keel.
I was supposed to call and get an update on Winston yesterday but I was so whacked out of it that I forgot – I’m an awful person – how could I forget my baby boy just because I had a bad head :-( I’m hoping to hear from the trainer shortly with an update.
So happy December boys and girls, have you all been good this year? Personally I think being bad is far more enjoyable especially if it’s with great company :-)
Have a great week xxx