Tuesday, 30 August 2016

Round 2 week 15 Neurologist and MS nurse on Wednesday

Another week in remission land and all is good. The sun is shining, we've bought Winston Dog a new toy call which rolls around and makes giggling noises - it's hilarious to watch, but if his dribbling skills get better I'm thinking of sending a video to the England Manager and suggesting Winston for a defensive midfielder role on the team.
The 3 day weekend was a lovely welcome break from everything, with far too much time on my hands I've become a blonde again for the rest of the summer (I give it 2 root touch ups before that novelty wears off again)
We've booked our car for Portugal and parking for the airport, still waiting for a response on Puppy Dog care, but I'm not overly concerned about that yet (give me another 48 hours and I'll be in meltdown).
Tomorrow is my bi-annual appointment with the Lovely Margaret, my MS nurse followed immediately by my bi-annual appointment with the Lovely Dr C my Neurologist. As I keep them both up to date monthly I'm expecting these to be pretty celebratory aren't you doing well kind of affairs.
I wonder if Dr C will be utilising the 'pokey-stick' to test what my sensations are doing this time ? If so there will be much 'ouching' since my feeling is normal everywhere these days. I will be enquiring about when the next MRI is due but that will probably be the responsibility of my new Neurologist.


It is finally time for them to hand me over to the Berkshire Health Authority which means that I will be needed a new Neurologist and a new MS nurse. This freaks me out more than anything else right now. I hope that they know people who are lovely and happy to work in my madcap way. I hope I'm less of an overhead because I'm so proactive. I send them my own blood results in the nice easy to read table. I don't need home visits, I'm happy to come and see them, and if that's while I buy lunch then all the more civilised.
For the new Neurologist, I really would prefer another true MS specialist rather than a general neurologist, preferably one who is Lemtrada friendly and open to new treatments and being brutal to MS rather than 'babying' it and me.
Now I've typed that out I feel quiet nervous about losing them, I don't want to, I'd like to keep them up to date on how I'm going even if I 'must' go to someone new .... what if they don't want a madcap spreadsheet wielding nutcase who is happy to do stuff by text message and email or over coffee? What if they just don't like me and want to be totally formal with everything? Or they've heard about this blog and regard me as a trouble maker stirring people up to want Lemtrada ...
Oh Dear
Wine
Please
13:08 - well it's not exactly Any Winehouse / Paul Gascoigne / George Best territory, but I've psyched myself out and started wanting a glass of wine at lunchtime ..... on a bright note it's closer to dinner time than breakfast time so that has to be a good thing right ?
Another update tomorrow after I've seen the ladies to let everyone know how it went xx

Thursday, 25 August 2016

Round 2 Week 14 - Normal and Boring is awesome


Week 14 is here again. It seems such a long time since this time last year, but it also feels like yesterday because the time has zoomed past so very quickly. We were in final week mode before the house move this time last year and I was thrashing myself to bits trying to get everything done in time.

This year it is a much more sedate affair. We drove up to Halifax on Saturday morning for a long weekend, Gareth’s parents were celebrating their 40th wedding anniversary. A big surprise meal at Long Can Hall had been arranged by Gareth’s sisters with loads of friends and family in attendance. To be honest Gareth and I just turned up bought Fizz and performed chauffeuring duties (well that was me) and helped take credit for the affair.

My thumb has started to heal nicely I’m only wearing the brace when I’m out and about now

– I should mention I’ve broken a LOT of bones over the years – my wrists a combined total of 11 times, countless fingers and toes - this is the 3rd time I’ve broken my left thumb (I think – it might be 4 but it was also the first ever bone I broke so I only really remember 2 VERY clearly), an arm, an ankle ….. I have some random air bubbles in the bone marrow in various part of my body, and they keep threatening bone density tests.

Despite the fact that I seem to break ridiculously easily, I heal unbelievably quickly – 10 days for a scaphoid bone healed (usually in a cast for 6-10 weeks) and 17 days for the Radius bone in my left arm which had to be manipulated back in line by some very strong men swinging on my wrist and elbow to realign things (bottles of becks with tequila slammer chasers were both responsible for this injury occurring and for my lack of drama describing bone manipulation)

We came back down to the South on Monday and back to work Tuesday for a rest. A 4 day week naturally means cramming 5 days of work into the remaining 4 days by whatever means necessary.

This weekend is a bank holiday weekend in the UK so another 4 day week next week too – a girl could get used to this (well I’d like to hence the regular investment in lottery tickets)

We have Authentic Stone Baked Pizza Sunday coming up this weekend, and for once we aren’t going to The Pot Kiln in Yattendon.  Majority rule dictates we introduce the others to the new place we’ve discovered in Sonning Common owned by the fabulously Michelin Trained Santiago and his wife. So Sunday evening will be The Bird In Hand Pizza night even if the Chapmans have double booked themselves and have to duck this year – their loss – when we complete our planning for the Zombie Apocalypse they’re going to just have to take the jobs assigned to them.

Apart from the Gas Chamber on Saturday lunch time - I genuinely have no idea what the rest of the weekend will involve and that seems pretty fantastic to me.

Life is pretty quiet and uneventful on the MS front, no improvements or deteriorations to report which when the MonSter has touched your life and you’ve been through a treatment like Lemtrada is exactly what you want life to be. Boring quiet, nothing weird happening to your body just lots of ‘same normalness’ (I thought I’d made that word up but apparently the spelling thing likes it)

So YAY for BORING and NORMAL long may it continue

Tuesday, 23 August 2016

Round 2 Month 3 Blood Results

Well the scores are in for this month, they are still tracking equivalent to the ones after round 1, although there are some high readings on some of my bloods (the light blue highlighted ones) this month this could be a result of 2 things ....
  • I 'could' be fighting an infection
  • It may have something to do with me breaking my thumb last Wednesday night ..... it might be the way my body is repairing the repairing damage.
I think option 2 is the more likely one if I'm honest because I feel great so it's hard to believe I might be coming down with something. What will be will be I guess.


So here they are this months results. Enjoy xxx




Thursday, 18 August 2016

Round 2 Week 13 - OUCHIES - Broken thumb

So this is a non MS . Lemtrada update and really just to give you all a bit of a giggle.


I woke up yesterday morning with a sore thumb on my right hand. It was fine when I went to bed so I just thought I'd slept funny on it and went into work as normal.
By lunch time it was the size of a butchers sausage and it had that deep inside pain that I can only describe as feeling like tooth ache or ear ache but in my thumb.
I've broken a few bones before and started to wonder if it might be something more sinister and decided to drop Gareth a text .....

A quick trip to A&E at the Royal Berkshire hospital and an X-Ray later and I'm now sporting a black thumb splint type affair to protect the damaged digit as apparently I've chipped off a piece of bone from my knuckle - in my sleep it would appear. They've also mentioned that I have 'degenerative bone disease' in the offending thumb - arthritis
 - now before everyone gets all excited and thinks this could be anything to do with my MS or Lemtrada I should point out that both my Mum and Grandmother had the hereditary form of arthritis so it has always been on the schedule for somewhere along the line.
So I did what any loving wife would do in these circumstances - I screen shot the text message and posted it to Facebook whilst tagging my husband to name and shame Gareth in his 'Text Confession' to give everyone a giggle and mentioned his aim must have been 'a bit off' since he only managed to chip the bone not squish it completely LOL


I suspect I've dropped a LOT of Wife Points in the last 18 hours


Pass the ibuprofen please.