Tuesday, 29 September 2015

Week 19 posting from France

Hi all, it's LemGirl on tour this week.

 Gareth and I are in Normandy doing a bit of a D-Day tour with Gareth's parents. This has been booked for a couple of months, and after losing Nana, and then her funeral last Friday it's all been a bit frantic. I wanted to be away this week because on Friday it's going to be 2 years since I lost my Mum, today is 1 year since my diagnosis and this time in 2013 I was sitting in a hospital in Solihull and a doctor was telling us that this was the end for Mum :-(  - since then I've lost both my Nana and my younger brother in May and if I'm honest my head is not in the best place right now.
Better to be away and doing exciting stuff to keep me grounded and thinking about other things.
The Reading MS Therapy Centre were great last week, getting me 2 oxygen Therapies in 3 days to top me us before the funeral (which although small went well and was a lovely send off for an amazing lady) and a week without my trusty HBOT treatments.
So far we've done Arrowmanches, Bayeux tapestry, and dagnammit my minds gone blank - where the heck was I this morning - oh yes that's it Pegasus Bridge. Tremendous history and such a strategically brilliant piece of planning that brought the beginning of the end of the Second World War.
MS wise, I'm noticing the tiredness of driving more than 1000 miles in 5 days is making my old symptoms more pronounced. My left arm is getting a little numb and my whole left hand ranther than just my thumb and first two fingers have the buzzing electric sensations. It gets better after sleep, but I know I'm pushing a lot and tiredness makes things worse. I'm going to need to go back to work next week for a rest :-) :-) :-) .... For colleges reading this - I'm joking - honest ;-)
Friday will be hard, facing the day without my brother for support, but it will be okay.
Hope you're all taking care of yourselves and each other
Tracy
Xxx

Tuesday, 22 September 2015

4 month blood test results are out - The Lymphocytes they are rising

Woohoo - there are songs in my head
'It's coming up, It's coming up, It's coming up, It's Dare'
'What's that coming over the hill Is it a Monster Is it a Monster'
So I'm officially more than 1/3rd of the way to the lowest level of Lympocytes


The full Excel versions are on the UK and Ireland Lemtrada facebook group and the Lemtrada for MS facebook group and can be downloaded in Excel feel free to download it stick some extra lines in it use it as a template or a reference source. If you have any problems message me and I'll do what I can to help


  Lower Level Upper Level BASELINE June July  August September
Blood              
Haemoglobin 120 160 144 146 143 137 137
WBC Count 4.0 11.0 11.9 8.8 8.8 8..8 7.3
Plt count  150 500 289 196 247 280 272
Rbc count  3.8 5.8 4.67 4.68 4.45 4.31 4.25
Haematocrit  0.36 0.47 0.445 0.444 0.422 0.419 0.413
MCV 76 103 95.3 94.9 95 97.3 97.2
MCH 27 32 30.7 31.3 32.1 31.7 32.2
MCHC 300 360 323 330 338 326 331
RDW 11 16 13 12.8 12.9 12.9 12.6
Hypochromic  RBC % 0 2.5 0 0 0 0.0 0
Neutrophils  1.8 8 8.09 8.1 7.3 7.22 5.84
Lymphocytes 1.3 4 2.5 0.09 0.35 0.44 0.51
Monocytes 0.2 0.8 0.83 0.44 0.79 0.79 0.58
Eosinophils 0 0.8 0.24 0.9 0.18 0.26 0.22
Basophils 0 0.3 0.12 0 0 0.00 0
Liver Function              
Bilirubin 0 21 9 4 5 6 7
ALT 0 60 21 19 19 14 20
Alkaline Phosphatase 30 130 51 54 50 49 50
Albumin 35 50 45 43 43 41 41
Thyroid Function              
TSH 0.35 4.5   1.84 2.52 2.43 3.55
Urea and Electrolytes              
Sodium 133 146 139 143 140 138 137
Potassium 3.5 5.3 4.7 4 4.3 4.8 4.5
Urea 2.5 7.8 3.8 3.9 6.3 6 5.1
Creatine 44 97 62 60 64 63 67
eGFR per 1.73sq m 60 99999 >90 >90 >90 >90 >90

Sunday, 20 September 2015

Week 18 - day 1

Up bright and early this morning to go and have my regular Saturday oxygen therapy. The in-laws are here for a few days with a family friend.

My phone rang in the decompression tank and it was my Aunt saying Nana was failing. Her breathing was deteriorating and her extremities we're going dark. Once The chamber was re-compressed I jumped in the car for the 250 mile trip again. It took me a respectable 4 hours to get there and I arrived at 17:50, stopped at the nurses desk on the way up to Nana's room and then went up. I held my aunts hand we both told her how loved she was and that we would take care of each other - then she was gone - less than 5 minutes in total :-(
Kathy and I are the last of our branch of the family and I know I'm a rubbish niece, I don't call her enough, I don't see her enough, I love her dearly and Nana was her Mum. It was important to me that I be there for her and with her when this happened and I'm so proud that Nana hung on and waited until we were together with her before going to her rest.
It's so strange, I'm heartbroken again just like losing my brother 16 weeks ago, but unlike losing my brother, for Nana I'm pleased, her dementia was so very advanced and for so long watching her disappear and become so dependent upon the staff at Lyngates for everything had been devastating, it feels like we've been grieving for so very long for the strong proud woman that ruled us all with a velvet glove. She'd have been mortified to see how she had become.
So while I'm heartborken I'm not broken - well not totally anyway. Just a bit fractured and distracted. I'm home again now, we headed back to our little corners of the UK wanting our own beds not a night in a camper van on the care home car park. I'm tired but Gareth bless him got me wine which I am self medicating with. Toasting Nana's long and eventful life - that's a story for a day when I have a keyboard and not an iPad to tell how strong she was.
All things considered despite the stress and tiredness of a 500 mile round trip in a day I've not gone all pseudo-relapse (yet - but if I do I know what it is and won't panic)
Best get practicing again with Footprints and She Is Gone - looks like I have to stand up and read for another person that I love

Footprints

One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
One belonging to me and one to my Lord.
After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.
This really troubled me, so I asked the Lord about it.
"Lord, you said once I decided to follow you,
You'd walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don't understand why, when I needed You the most, You would leave me." 
He whispered, "My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you."

She Is Gone
You can shed tears that she is gone
or you can smile because she has lived. 
You can close your eyes and pray that she’ll come back
or you can open your eyes and see all she’s left. 
Your heart can be empty because you can’t see her
or you can be full of the love you shared. 
You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday. 
You can remember her and only that she’s gone
or you can cherish her memory and let it live on. 
You can cry and close your mind,
be empty and turn your back
or you can do what she’d want:
smile, open your eyes, love and go on.

Thursday, 17 September 2015

Nearly the end of week 17 - feeling good

Hi ladies and gents, the latest instalment of my post Lemtrada life
I managed to get into an Oxygen Therapy treatment on Tuesday night - oh the difference it really does make, I came out clear headed and bright and over the evening all the aches, the foot drop and tiredness in my limbs went away too. The Oxygen Therapy really is my 'not so secret' weapon in the fight against MS and contributes so much to my Post Lemtrada wellness
We are now deeply in the getting ready for the family mode - Well Gareth is - he's been unpacking some of our remaining boxes, putting up pictures and an all round star - me I've been sitting in an oxygen tank and on a works 'Team day' where we got to do lots of team building, bonding and putting the world to rights activities' followed by some wacky blindfolded picking things up in an obstacle course guided only by musical instruments (strangely they didn't want me to do that one - Who ME ?? The one with the coordination of a drunk Bambi on rollerblades trying to cross oiled ice - wearing a blindfold - How rude - anyone would think my lack of co-ordination was widely known and considered not a benefit to the team  :-) ......), and building a catapult contraption to fire a rubber egg the furthest distance (we were spectacularly rubbish at this event) followed by a meal - an 'indoor BBQ' since it was absolutely throwing it down outside - gotta love the British weather :-).
The in-laws arrive tomorrow for the weekend (I also have a man coming to fit a microchip reading cat-flap tomorrow and a lady who's going to do our cleaning for us at 11am as well - plus I'm working from home)
There's a space in the 11:45 oxygen tank on Saturday with me, and I want to get my father in law in it to see if he sees anything like the improvement I do after using it (could be a challenge - but I'll point out it's great for hangover curing too so that might sway it after a night at our house :-) ....)
Blood test went perfectly yesterday, a single hole to get the blood out again :-) I'm going to start annoying the lovely Margaret for the results tomorrow and publish them ASAP for everyone on here, and the spreadhseet (yay I got the words right) will be updated on the two MS Facebook groups as well so other people can continue to use them as a comparison point - If anyone's struggling with that drop me a message and I'll help / load yours in too for you :-)
All the pseudo symptoms from being so over tired having over done it once again quite spectacularly have now receded as I said, I'm just left with my partially numb left hand and those little electric worms in there doing their crazy thing, but that's situation normal, it was the first MS symptom to arrive so if it's going to go I suspect it will be the last to leave.
I've also got my two comparative physio reports to publish, but I'm struggling to get them here into the blog, the first was from April this year a month before Lemtrada and the second was 2 weeks ago at the end of week 15 post Lemtrada - the difference in them is absolutely amazing, the strength / sensation / mobility differences are so dramatic (well not as dramatic as Charly B putting her wheelchair in mothballs which is absolutely amazing - but dramatic for me)
My positivity is at full charge, life is good and I'm living it to the fullest.
My love, best wishes, virtual hugs, air kisses, anti bac hand shakes to you all
Tracy
xxx

Monday, 14 September 2015

Week 17 - MS - Nah it's not a problem

So sorry updates are not coming bi-weekly of late.


With the house move, settling in and the latest family news I'm really being quite rubbish at this.


I've now gone nearly 10 days without an oxygen treatment as I had to cancel Saturday


So the family thing - My grandmother is 91 and has lived in a dementia care home for nearly 10 years now. Her dementia is very advanced, she's pretty much in a vegetative state, and has been for probably nearly 3 years. Can't speak, cant feed herself, can't walk, completely dependent upon the nursing team for everything, and spending most of her life sleeping. Mid last week the alarm bells were rung as Nana stopped swallowing food and liquids. By Friday my Aunt and I assembled in Bolton at the care home to 'sit vigil' for her with them expecting with her being so frail and weak that she would be gone within 48 hours or so.
As I write she's hanging on in there and not deteriorated since we arrived last Friday. Nana has always been such a strong willed controlling person (must be one of the many places I get it from) but she's not done and soldiering on.
We have mixed feelings about this, it feels like we've been grieving for nearly 10 years as the little pieces of her and her personality have been eroded by the dementia. If she could see how she is now she would be as mad as hell and tearing strips off us for allowing this to happen to her. While it breaks our hearts, it would be a blessing for her is she went to sleep and to her rest to join Granddad, Mum, Dad and my brother Ian (actually she would be furious to get there and find Mum and Ian there - but we couldn't tell her they were gone, she would have just been terribly upset but not understand why)
I've spent 12 hours driving over the last few days, not enough hours sleeping and a lot of time being emotionally wrung dry. As a result I'm exhausted. Exhaustion always makes my MS like symptoms feel more pronounced, I've had a little foot drop, I'm word splicing again - I referred to a SpreadSheet earlier as a ShedShreet, and physically I'm so tired I'm very shaky. It's not a relapse or MS raising it's head permanently it's just exhaustion and I need to rest for a few days (It took a week to get over house moving weekend so that's what I'm expecting)


My 4 month bloods are scheduled for Wednesday morning (a week early I know - but nice nursey - the one who always does it with one hole in me is on holiday next week and I'm not letting the other savages near me with a pointy thing after the 5 holes for one blood vial fiasco)


Should have some more positive lymphocyte counts to report by the end of the week or early next week :-)


So back I go to waiting for news of Nana, a call saying get here now, or one saying she's gone. I've had quite enough of the loss over the last 4 years and heaven help me I'm dreading reading Footprints another time :-(


But I'm tough - a Lem-Warrior and all round hell on wheels. Everything will be okay.


Hope you're all taking care of yourselves, staying strong and enjoying the love and care of family, friends and furry critters.


Love and the usual from me
Tracy xx

Monday, 7 September 2015

Week 16 Early update

Hi ladies and gents, hope you're all taking care of yourselves


Week 16 already - WOW where did that time go ? Logically I know where it went, but it seems to have flown past so quickly and made such an amazing change to my life that it seems so very fast - it's been 1/3rd of a whole year - perhaps I'm just getting old as time seems to fly past so much more quickly the older I get. Remember when you were a child and Christmas's seemed to be a lifetime apart, where as an adult they seem to zoom up one on top of the other.
MS wise, I've seen no further improvements in the last week, but no deterioration either so that's a great situation for me. I've managed to catch up with some of the sleep I needed after moving weekend and got in my Oxygen Treatment on Saturday morning and am back at full speed again.
I did have a strange thing last night but it was very fleeting, I've been wearing flip flops a lot since my Lemtrada as if my feet get hot the rest of me seems to overheat like an old radiator. I was wandering round the kitchen and suddenly the bottom of my feet felt like they'd been blow torched - I removed the flip flops and stood on the cold tiled floor and it went away. Perhaps I just need new flip flops, but worth mentioning regardless :-)
It's lovely here in the UK at the moment, the sun is shining and it's warm - I like this, I'm probably part lizard because I love sunshine even if my red hair, green eyes and freckles do make for it being a bit of a 'troublesome' relationship - Factor 1,000,000 is my friend :-)
The dogs finally realise that the new house is now home - Winston is making himself useful by pulling out all the old branches from the bushes onto the lawn for us. I finally have the rug and coffee table I've wanted for many years (middle aged, middle class problems)
I'm now starting to look forward to our holiday in France at the end of the month with Gareth's parents, we have a rental house near Caen and will be showing Gareth's parent's around the Normandy landing sites - his Dad has never left the UK before and is very excited :-)
Life is good, long may this status quo continue.
Love, virtual hugs, air kisses and anti-bac handshakes for you all
xxx

Tuesday, 1 September 2015

Quick post oxygen therapy update - feeling epic again

I walked into the Reading MS Therapy centre this evening and they all looked at me and said I looked awful ..... I was like an arthritic old lady. All the work moving over the weekend had truly ruined me. 1 hour and 40 minutes later I came out bouncing like a teenager, aches gone, balance back cog fog that I hadn't even realised clear. Feeling awesome again :-)
Really can't recommend this highly enough as a complimentary thing for your post lemtrada regime xxx

Early(ish) week 15 update

Hi ladies and gentlemen
Apologies for the slow down on updates, but its been 'moving weekend' which naturally took the best part of a fortnight to prepare for and obviously will take another 2 weeks to get over.
Before my 'MS Update' I'll explain what I've been up to
2 weeks of doing an extra hour or 2 after work and several hours at the weekend of packing up / cleaning up / painting over marks on walls / driving repeatedly to the tip (dump for you US lot) to get rid of 'stuff' and moving day arrived on Friday
My 3 man removal team were 2 hours late arriving with the 2 vans and one of the three men had a 'bad leg' so he didn't do his share of the work, Gareth and I ended up helping the other 2 with the removal of everything from the house and the shed and then getting it all into the new place while 'bad leg' (who's limp came and vanished repeatedly) had a rest in the cab of the van.
Unpacking was the name of the game once we got there - I had the kitchen unpacked Friday so we could eat and by Monday when the new furniture arrived all but 5 boxes completely finished. Yesterday was more unpacking of heavy oak furniture and taking the packaging to the tip (again - I'm on first name terms with half the staff there now)

So the update on how I'm doing
Today I feel like the van ran me over and then reversed over me again to make sure I was broken. Everything hurts, I'm exhausted, my brain is fuzzy and my limbs are weak - well of course they are I've worn myself into the ground - so it's good 'broken' and something I would never have been able to achieve 4 months ago :-)
Please note none of this is MS / Relapse / Lemtrada related it's because I've worked like a slave for the last 4 days !!!!
Tonight I'm off to the Oxygen Chamber and hoping I come out feeling like a new woman again (or at least a reasonably recycled one)
An hour each evening this week and we will be done by Thursday evening with unpacking and living life in our new home :-)
Let the good times roll ladies and gentlemen - relish that sometimes you have sufficient energy to break yourself xxx