Tuesday 26 March 2019

Hei til folket i Norge

Sorry if Google translate got that horribly wrong, but my Norwegian is none existent.

I've just been looking at the stats for blog views and the blog seems to be read by a lot of people in Norway, I have no idea why it has so many readers there, but thank you all for reading and stay strong, keep fighting and I hope you all kick MS squarely in it's balls xxxx

3yrs 44 wks - Being bankrupted by pets and blood results

Very ouchie weekend – yet another thing to add to the lit of ‘things Tracy is allergic to’ – my new very expensive face cream. It would appear when applying it I got it far too close to my eyes and I’ve spent all weekend like I’ve been punched in both eyes, they’re puffy and feel burnt and bruised and they've been feeling like that since last Friday - it has been horrid. Anti-Histamine’s are in full use and needless to say I’m steering well clear of the cream for a few days which sadly will probably make my eczema play up  and make my face all dry and flaky but at least my eyes won’t look swollen half closed, red and horrid.
My car is all sorted with the paint protection and the interior protection applied again and Bob is installed back in the car – I’ve done everything I wanted and needed to, but I was very aware that he wasn’t there; it’s odd how insecure I felt without him.

Busy week for vet visits, Amber has her annual Phenobarbital blood check tomorrow which we are hopeful should come back with the usual ‘all okay’ output. Bella is being ‘done’ on Friday (assuming the contrary mare doesn’t come into season again before then)
I’m also being taken out on ‘date night’ by Gareth on Wednesday, off to the Showcase to watch the film Fisherman’s Friends which I suspect is going to be funny and poignant and may well make me cry buckets. (hopefully my eyes less stingy and burn-y by then or salty tears are going to be a nightmare)

The sun is shining here in Berkshire, spring is in full swing with daffodils blooming, new growth is coming in on the trees and the days are longer and lighter. It certainly makes for a much more ‘up’ feeling being able to take the dogs to the park for a run in daylight rather than in the dark wrapped up like we are going on a polar trek with head torches, flashing dog collars and glow in the dark balls. Wet muddy dogs needing a bath when they get home, the bathroom looking like a muddy tornado passed through it. Just sitting in the garden with a glass of something in the evening sunshine
It’s now Tuesday – I wrote the above yesterday, I’m back in my contact lenses today and my eyes whilst still a bit puffy are back to feeling normal.

Last night was incredibly traumatic, at about 10:30 Murphy cat came home with what looked like a possibly broken leg – cue panic stations, an emergency call to the 24 hour veterinary service and a mad dash to get him looked at. Fortunately, it wasn’t a break, but it was an abscess caused by a nasty bite from another cat. The little bruiser has been scrapping again, and at the age of 9 he’s come off worse than a bit or ear damage this time. His leg is now part shaved it’s been lanced and drained and looks bloody awful but his leg magically shrank back to the correct shape. I’ve had to email all our neighbours and let them know what has happened to him, as he routinely lives in all 7 houses on our road. I’ve given the instructions for how to bathe it with salt water as well.

Nearly £300 poorer; Ambers Phenobarbital blood tests tonight (about £100); a £400 bill at the end of the week for Bella being spayed – bloody ouch.
A nice big euro millions win tonight certainly wouldn’t go amiss LOL.

Sun’s still shining though, happy days xxx
Lastly – they were not complete yesterday, but today my bloods are fully back. And great news – my thyroid readings are back in the normal range – BARELY but back in the normal range YAY for a ‘normal’ thyroid reading so here we go my month 46 blood results are in, enjoy …..

Thursday 21 March 2019

3 yrs 43 weeks - New car, new bloods, and new appointment with 'The Spine Guy'

Another busy weekend with work cutting into activities, but also a lovely win with another pair of Levi’s 501’s -  I went back to get another pair, could only get them a size smaller which has happily worked out rather well – these ones don’t slide down a little when I walk.
I picked up my mew car on Monday night. Itch loved version of my belowed rent car, I pick up my neplaceme smaller which has hapily  pair of LEvi' is a newer version of my much loved Tourneo and hopefully will bring me as much joy and comfortable driving experience as the one I’ve had for the last 3 years. It seems odd to be so attached to a car, but it’s been a pleasure to drive and so very practical with the massive dog crate being permanently set up in there and the ability to have Bob in there too. I’m still having ‘memory fail’ moments about it being a button start rather than a key, I keep panicking that I might have walked away and left the keys in it. The heated seats however are a joy.

I’m back to the Spinal surgeon on Thursday now I’m finished the Steroids for the allergic reaction to the Gaberpentin. I’m hoping he can suggest something else to try rather than stabbing me in the neck with a big needle, the Gaberpentin had actually started to have the desired effect before it all went wrong, the feeling to my skin in my left arm had started to return to normal and the heavy feeling had gone – it’s all back again now.
Monthly bloods again on Friday, fingers crossed the badly behaved thyroid has started to behave a little better and the readings come a little more in line with normal, I’m so over the thyroid weirdness now, it’s rubbish and I’d like it to get itself under control.

In other news Gareth and I have managed to do something which is almost completely unheard of ……
We’ve booked a holiday !!!

It will be our first proper holiday together in 2 years !!!
We are going for a week in August to Watchett in Somerset. We have booked a dog friendly holiday rental with a completely secure garden for the beasties to run in. It seems such a long way off, but it’s only 5 months away. We decided to stay in the UK this year because Amber has been so frail with her stroke and her age that we didn’t want to leave here with Aunty Kathy or Kennels in case something happened. When that time comes we want to be with her, holding her, telling her we love her and it’s okay to run free now. (cripes but just typing that had tears welling up)

Apart from that, life is incredibly beige if I’m honest, I feel like I should have more fun, be more exciting, I’m sinking into middle aged dullness.
So my promise to myself for going forwards is that I’m going to do more and be more, just more everything. Reading my own updates I’ve decided I need to have a more exciting life


Wednesday 13 March 2019

Gaberpentin - Allergic reaction with potentially severe outcome

An unusual out of cycle post for me but I think it needs to be told.

I should add up front this isn't something caused by Lemtrada - I'm allergic to a lot of meds in a lot of different ways so yes I'm one of those very sad people who read the fine print on those bits of paper that they put in the box (a few days after I start toking something because I don't want to 'fake myself' into looking for something.

Gaberpentin – I’ve had to stop taking immediately because I’m having an allergic reaction to it.
I should say I know Gaberpentin is frequently prescribed for people with MS for neuropathic pain. For me it was NOT prescribed for MS it was prescribed for the pesky C7 spinal problem I have and as of an hour ago it’s now on my list of ‘never to prescribe again because she's allergic’ notes on my medical record.

I got out of bed yesterday and everything ached, all my muscles in my body. Just a dull ache manageable with Paracetamol and I thought nothing about it. My balance also had become substantially worse than normal. This morning same thing – I ached in all my muscles took a couple of paracetamol and toddled off to work a little wobbly.
I got here and decided to just have a quick check of the paperwork that came with Gaberpentin to see if it could be causing the aches …… this is what I found: http://www.mhra.gov.uk/home/groups/spcpil/documents/spcpil/con1531717994252.pdf

Needless to say having lost my younger brother to multiple organ failure (Kidneys and Liver) I freaked the f*** out was on the phone to the doctors immediately –can you be here in 30 minutes – yes sure I can the weekly project call can wait  ….

No more gaberpentin, and a big course of steroids and anti-histamine to counteract the allergic reaction. My bloods aren’t due to be taken until next Friday but they’re probably going to be more than a little ‘funky’ this time. (Must let Dr N know in advance)
For those who read this regularly this next bit will be a ‘here she goes again hypothesising’ moment. For those who are new – please bear in mind this is me wondering out loud and in no way am I a medical person – what I am is a program manager / project manager in Telecoms – I analyse risk and mitigate It on a daily basis.

So brace yourselves – here I go.

·        I wonder how many people with MS are taking Gaberpentin

·        I wonder how many people with MS have symptoms like I have and just put it down to ‘MS Stuff / Weirdness’ and carry on taking it?

·        I wonder how many people who’ve had Lemtrada are taking Gaberpentin and have had these symptoms for a while or developed them post Lemtrada and put it down to 'MS Stuff / Weirdness' ?

·        And lastly the big one – Since that nice warning on the Gaberpentin paperwork says these feelings can be as a result of muscle breakdown which can cause critical or fatal kidney failure – The whole ‘Good Pastures / Anti-GBM’ warning with Lemtrada  - could that also be as a result of this?
(Anyone else having that feeling of groundhog day??)

So there we go – not my usual 2 pages of soap boxing, but interesting questions that should be asked and a little information that I think needs to be shared with anyone who’s an MS person, a Lemtrada person or just someone taking Gaberpentin.
So it’s steroids for 5 days YUCK – I really hate these things but if they’re helping to neutralise the allergic reaction they must be done.

Follow up with Mr B has been requested – looks like I’m going to have to have more of the revolting things injected directly into my spine
So happy days ladies and gents xxx

Monday 11 March 2019

3 years 42 weeks - Sunshine, lots of energy and Levi 501's

A week of intensive sleeping (outside of the work thing because doing so at work is rude and apparently unacceptable) J

Last week was a long and sleepy one, Bob was retired again at the back end of the week once my 12 hour sleeps each night helped put me back on track. It made for Tracy being a very dull girl though and Gareth got lots of game time.
Amber is back to her normal beagle self, following her nose, staying on her feet mostly and only falling over occasionally as oldies tend to do.

I think the new dosage of the thyroid meds is kicking in now, I’m feeling more human again – I’m looking forward to my monthly bloods at the end of next week, I’m hoping they are back in a more normal range again. The Gabapentin that the spinal surgeon gave me for the C7 vertebrae / bulging disc thing also seems to be doing something right, I have sensation in my arm again and the aching has become much less than it was (YAY no more sitting in the back of an ambulance with an ECG hooked up)
The sun is shining here today, it looks glorious out the window, but the brutal wind definitely takes the pleasure out of going out to enjoy the free vitamin D supply.

Tonight I’m off to sign the paperwork for my new car, another Ford Tourneo because van like or not it’s the most comfortable, practical Dog and Bob mobile there is. The new one is shiny silver rather than grey and it has heated seats this time (sadly not leather) so I’ll have a nice toasty bum when it’s cold (which hopefully will be not needed for many months) Should be picking the new ‘little (not little at all) car’ before the end of this week.
Last but not least – I’m sitting here at work wearing skinny Levi 501’s with my lovely cowboy boots. The weight I’ve lost recently is really helping with my mood, my outlook on life and my self-esteem / confidence. It’s been a really long time since I’ve just picked up a pair of jeans, eyeballed them and gone to the till with them. I got home pulled them on and felt awesome. It’s been a long time since I could do that – it’s been a long time since I even considered anything other than ‘fat’ supermarket cheap jeans. So I’m rocking my 501’s and feeling very happy.

Hope you have a great week and that there is awesomeness in it for you – much love


Wednesday 6 March 2019

3 years and 41 weeks - 37 hours awake messes with you

The epic weekend of working is done. I started at 7pm on Sunday night (nice way to spend my birthday - not) and finished at 6pm on Monday night. This was not helped by being awake at 6am on Sunday morning and not managing to get any sleep during the day - although I did have a rather lovely lunch at Pho - an awesome Vietnamese restaurant in Reading.

Total scores on the doors

Total time awake : 37 hours
Total time at work : 23 hours
Total time asleep when I finally got home : 12 hours

Back in the office at 08:10 Tuesday morning, Feeling more than a little jetlagged but the wheelchair stayed in the car not in the office so that's a win

Weekends like this happen very infrequently in my line of work. I'm the Senior Program Manager but when we have big implementation weekends like this my projct managers, test guys developers and Integration managers are all up and working these hours as well so it's only right and fair I'm there to support them to manage escalations or issues when they happen. Technically I'm no use when it comes to actually performing whatever actions are required to fix things, just co-ordinate stuff, but when it comes to keeping people fed and fuelled up with coffee and redbull (other energy drinks are available) to keep them going, to ensure if someone does need to stop or take a break I can swap them out for a fresh resource - that's my role.

It's unusual for someone in my role to stand up with the team through a whole window with the guys, but to be honest for me it's a duty of care thing, I shouldn't be asking anyone to do something I'm not willing to do myself.

Today I'm even more knackered than I was yesterday, Bob's been liberated from the car and in the office with me. I hate that I need him, but it is what it is *shrugs shoulders*

Amber-dog had what appears to be a mini stroke last Friday, she was awfully wobbly all over the weekend, falling over constantly when she tried to get up or when she was on her feet. It was awful and heartbreaking to watch, but by Sunday afternoon she had improved to just looking a bit drunk. We have to accept that she's very old now and it's going to happen some time soon. I'm not going to be ready for it, my Mum won't need me to look after her baby any more, I'll never be ready for that.

There is no other news in my life, it's been work, more work and a little more work and everything else has been sleep.

I'm a very dull person this week - sorry :-(

Much love and wishing you a great week xxx

Monday 4 March 2019

3yrs 40 weeks - Blood results and staying up all night

An unusual time for me to be posting, nearly 2am on March 4th, uner normal circumstances, you might be thinking that because yesterday was my birthday that I'm up late having been partying and possibly a little 'under the affluence of incahol'

Sadly this isn't the case, I'm stone code sober and sitting at my desk in the office rather cold and approaching the mid point for an overnight implementation. I'm running on coffee, domino's pizza and a side order or pretty grouchy if I'm totally honest. It's going well so far though so that's good.

I've been here since just after 7:30 last night and expecting to still be here until about lunch time today (feel quite sick just typing that if I'm honest) It's going to take me a good couple of weeks to get over this and get my sleep patterns back to something approaching normal.

My February blood results are finaly fully available the TSH was the late commer to the party as usual. After suddenly going Hyper last month resulting in yet another change of medication dose.

I was hoping for a bigger change if I'm honest but it's been a relatively tiny one, but then changing levels on Levothyroxine is a little like trying to turn an aircraft carrier in a small harbour - a 927 point turn thats going to take a LOOONG time to complete. Hopefully a more stable reading next month.

In other news my doctor referred me to a Spinal surgeon about the numbness in my left arm. The MRI's have once again ruled out MS being the root cause of the change so those nice people at Bupa have paved the way to get me looked at quickly. Turns out I have some 'narrowing of my C7 vertibrae with inflammation pushing the disc bit around to somewhere it shouldn't be and pressing on nerves.

Humourously the first line of attack to help resolve this is to put me on Gaberpentin to try and help deal with it (LOL - never needed the damn stuff for MS) we are giing it a few weeks to see if it makes some difference and if not he's going to put a needle in my neck and inject the area with steroids GULP ;-(

Amber-dog has had a 'funny do' over the last few days with her balance and back legs going, a mini dog stroke type event, but she has been much better today (yesterday now given the time) we were both pretty shaken up by it as we were with her last 'funny do'  few weeks ago. She was mum's dog before she was our dog, the last thing that my mum 'needs me' to do for her, to take care of her baby girl - I'm not ready for my mum not to need me, I don't think I ever will be so she has to keep going for ever.

So I'm sitting here at stupid o'clock in the morning, absolutely exhausted and contemplating another coffee and blathering at you to keep myself from snoozing - sorry about that, I'll stop now and let you all rest.

Take care, much love and ZZZzzzzzzzzzz

Yikes 2 posts in a month

 Who is this person who's actually updating Tracy's blog I hear you wondering .... 2 posts less than 3 months apart - surely I'v...