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:

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

Friday, 15 February 2019

3 yrs 37 weeks - good news and possibly a mild concussion

The morning after the night (weekend) before

After Friday’s excitement, getting cold and wet, lost train tickets, taxis and lovely policemen, the news that I’ve achieved Lemtrada Gamer Level 4 Year Long Term Warrior. You would think the next thing I had on my ‘to do list’ would be to have a celebration and relax a little. Sadly this wasn’t the case, I got home just in time to start ‘implementation weekend’ for my project. This was a deployment which spanned a 24 hour period with key checkpoints at 7:30pm, 11:30pm, 04:00am, 07:30am, 11am, 14:30pm ……..

Needless to say I’m pretty broken. It’s going to take me about a week just to get my sleep back to a normal level and make this right again.

I’m pretty sure my thyroid going haywire again really isn’t helping matters; it really does completely flatten me when it’s misbehaving in a way MS never managed to.

In terms of life the world and everything, well the last couple of weeks has been a deluge of work and not much else, it’s existence and a never ending battle to keep ahead of the avalanche leaving no room for other stuff.

I’m not drowning, but I’m sure as heck not making much progress, treading water at best really. The fundamental thing is that’s good news – MS not getting worse is great, I just feel like I need to have something getting better as opposed to not getting worse if that makes sense. I just want it to be more

Its Valentine ’s Day today and we have a lovely meal planned at home along with a bottle of bubbly. Just a night on the sofa, cuddled up with a film; sounds about perfect to me. (Logistics of this with 3 dogs who also want to cuddle certainly doesn’t help with the romantic mood J)

Monday night went with a bang (not in a valentines type way) I lost my balance trying to rearrange the dogs on the sofa and went backwards over the coffee table. I neatly stopped my descent to the ground by using my head and right shoulder as a brake. OUCHIES …… I can’t lift my right arm without yelping like a baby and the banging in my head hasn’t stopped since. There’s a good chance I have a low grade concussion, but it’s not really stopping me doing much except I don’t seem to be able to remember what day of the week it is.
Oh and PS - I've just come back from a visit to my doctors appointment this afternoon - after the afternoon in an ambulance, heart worries which turned out to not be heart problems at all and the 'Do you know you have high blood pressure madam' converstion - apparently it's being in the back of n ambulance which raises my blood pressure because ouside one there's nothing wrong with it at all.

He is however sending me to a specialist about my arm - he wished me luck having the conversation with whoever I get through Bupa who tries to blame it on my MS - 4 years of MRI evidence of no progression and one of the top neurologists' in this country and MS specialist who has said it's not MS it's the neck injury causing the problems with my left arm and hand J

All of a sudden I feel like I've acomplished something - I've beaten my none existant blood preasure problem, I've a new specialist to house train ....

I think that calls for a celebratory G&T

Happy Friday my lovlies xxx

Saturday, 9 February 2019

3yrs 35 weeks - Blood results and MASSIVE Neurologist News

3 years and 35 weeks already. Sorry for not posting last week, Amber-Dog was incredibly poorly, an emergency vet trip last Monday night because she was throwing up and having problems breathing, X-Rays, ultrasounds bloods and medication, then 3 days in our own vets on a drip with pain killers. There is a £1,404 bill for the week for what basically seems to be a hugely expensive bout of doggy gastroenteritis. We got her home from the vets on Thursday (she was back to her vocal demanding food and insisting everyone pay attention to her) and life returned to normal.

Friday Gareths parents arrived for the weekend along with the snow, it took them ages to get here and as usual the route off the M3 and through Basingstoke made the national news for it's simple inability to actually manage a little snow with any dignity at all.

This week has been completely nuts at work, the lead up to a big deployment weekend at work. I've been in at 8am and still online at 10-11pm at night. I suspect I'll be paying for that next week when my body decides to make me slow down.

On Wednesday I got a phone call from London saying that my Neuro appointment was being brought forward to Friday - cue me having a bit of a flap attack and wondering what the MRI 2 weeks ago had shown up that necessitated the appointment to be brought forward by 3 months EEEK

I've been into London today, and met with Dr N, apparently good news needs to be shared quickly under Berkshire and London NHS

4th year NEDA - No Evidence Disease Activity

Lemtrada is still doing its job, everything I hoped and dreamed it would do. Yes my thyroid has gone a bit tit's up (more about that with the bloods) and sometimes I need Bob for the things that require significantly more stamina than I currently have. But I'm not collecting scar tissue in my brain and spine like some collect shoes or tattoos and I'm not collecting a load of new symptoms. So YAY BLOODY YAY.

Something Dr N also said is that I'm approved for a 3rd round if I ever need it, so I don't need to fight for it. All that time doing the cost benefit analysis of it to show for me it really has been a cost effective investment for the NHS, and the risk assessment of alternative types of treatment and their suitability can happily get put away. It's lovely and reassuring to know that I would not have to do battle to get a 3rd round should that ever be the day.

While I'm waxing lyrical about the NHS, I should also give a huge shout out that I can't find a single negative about being under Berkshire (apart from having to use public transport to get there) The efficiency and professional way they manage your appointments, the not sitting around for hours and the setting up of your next MRI’s and appointments pretty much before you even get home from the one you’ve just been to.

It’s Friday night, the first phase is going well with the deployment and the next update call is at 4am so I’m going to go and hit the sack shortly.

And last but not least – blood tests, I had a call from the Doctors this week – I’ve been asked to reduce my Levothyroxine from 150mg a day to 125mg … it would appear that it might have been a little much as I’m now showing hypo on my blood results (sadly I haven’t suddenly become a svelte size 10 (UK) size)

The other wierdies are starting to come back in line and my Lymphocytes remain happily on the low side of the mid-range so they’re behaving themselves (as the MRI shows)

After getting thoroughly soaked about 8 times getting into Hammersmith to Charing Cross and back, losing my train ticket between Paddington and the hospital, spending £60 on trains and taxis, accidentally spending £14 to buy a coffee in  ‘cup for life’.

Well I’ve had the biggest smile on my face, this is the best news I’ve had in ages, add to that apparently it’s far more convenient to put Bob and I in at the front of the train so I’ve had 1st class upgrades going both ways.

Today has been a bloody good day and I’m a very happy girl.

Anyway those blood results .....