MS Update: Big Decisions Part 2!

Following on from my last post I have made my decision and I'm going to go for the Tysabri treatment. My bloods were all taken on Friday to see if I'm JCV positive or negative. Even if I'm positive I'm still going to try the treatment, in my opinion there are far more dangerous things and the benefits that I could get from it far outweigh the risk. I've read up on a lot of people who are also positive and are on Tysabri, all getting great results. Also there has been so much on going research into developing PML whilst on Tysabri, I'm confident that I'll be fine. Some of the best specialists in the world work where I'll be having my treatment so I completely trust them with my life.

So what is Tysabri?  

Well this short video gives you a quick insight. All very clever stuff.

I'm so excited to get on this treatment. I've kid myself for too long that I will recover from each relapse. You never recover fully and all I've done this past year is relapse over and over. Infact, the one that I'm currently going through is my 10th, so it's time to put a stop to this. 

Cheers Copaxone. It was a blast but you're just not working well enough!

This relapse is really getting to me. It's the worst I've had since before I started Copaxone but I'm determined to not take steroids for it. You're not supposed to be on them more than 3 times a year because of the damage they do, and since this time last year I've been on them 7 times. Lot's of rest, diet tweaks and staying calm is all on the agenda for me until this has passed. Hopefully it won't last very long, I have so much to do and that's not just the housework that multiplies by the second. 
In better news, check out this awesome hat we found in Tesco! 

I'll try and vlog later. TRY. 

Laters x

MS Update: Big Decisions

Today I hopped on a boat to see my Neurologist for what should have been a simple and quick appointment of how my drugs are going and them ticking the box to say they are happy for me to keep going with the treatment. Unfortunately I had some pretty bad news instead.

They are not happy with the rate my disease is progressing. I'm relapsing over and over and even though my Copaxone injections have helped a lot and made my relapses less severe, the fact is I'm still relapsing. As soon as I recover BAM. Relapse again. On the outside I am doing remarkably well considering. I only have to use my crutches when I'm having a bad day and although I walk with a really fashionable limp, I still walk as much as my body will let me.

The problem is on the inside. With every relapse there is permanent damage to my central nervous system and brain. When I think about this I realise just how lucky I am that I'm still walking. Even the neurologists are amazed. But the point is all the damage will hit me on the outside, and already is slowly.

I have been advised to try the Natalizumab (Tysabri®) treatment. A monthly infusion of lovelyness to try and stop the progression of the disease. There are so many things to think about with this treatment. If it works it's as close to a cure I could get. But it carries the very dangerous risk of PML. A nasty brain infection that can be fatal.

I wont bore you with the facts, all the info can be found in the link above. This is really just a quick update on the MS side of things and what's going to be on my mind for the coming couple of months. It's a big thing. I'm finding it very strange having to think about the future when I have forced myself not to, and to just live day by day as the future when you have MS is just depressing. I will be on the treatment between 2 and 5 years max and have to take things into consideration such as having more children and the fact that, the longer I leave it, the worse I'm going to get and the overall results of the treatment wont be as good as getting on it ASAP. Sooner you fight it, the better it is for the treatment to try to stop progression...if that makes sense.

Such a huge mixture of emotions today. Early night for me. 

What I Wore Wednesday

Today I have the joy of waiting in all day for my annual house inspection. I might pop into town and continue my job hunt afterwards depending on what the miserable weather decides to do so nothing too interesting today dress wise

Hoodie - O'Neill, Jeans - Levi's, Boots - Timberland. Underneath I'm wearing the same black top as last week's WIWW. 

A close up of the boots...which for some reason makes my legs look huge :/

Finally a bit of good news today. We had been trying to order Sky TV/Phone/Broadband for a while but we were unable to as the exchange for my area was full. Today we finally managed to order and it's all being installed this coming Monday. I'm over the moon as even though we will be getting TV too, we will still be saving money. Very happy bunny! 

TTFN Kookskis x

Kook Loves! - Bathroom Essentials

After a couple of gorgeous (although soggy underfoot) days the weather is once again crappy. During October I'm usually jumping on crunchy leaves singing "It's the most wonderful time of the year!..." like a five year old child. If I was to try and do that lately I'd fall on my ass and cover my face in mud...and probably dog shit knowing my luck. 

As miserable as it is outside our bodies don't have to be. Give yourself a happy body from the most important part of the day, apart from dinner, with my shower time essentials. 

Dreams Unlimited shower gel from The Body Shop

I picked this up from The Body Shop outlet in Gunwharf Quays, Portsmouth, Where the items are already discounted but the more you buy, the more % off the total price you get on top of that. I spent about £4 something on what would've been over £20 so I have already put the place in charge of a significant portion of my Christmas shopping. Don't know what to buy for the female members of your family? This place is for you. 

The fragrance of this shower gel is deliciously summery and fruity without being sickly sweet. I'm so fond of it I might have to pick up the fragrance when I'm next over there as I think that was only about £3 full price. A little goes a long way and it turns into a lovely creamy lather you can rub all over yourself whilst clinging to the last memories of summer. Yum.

White Glo Whitening Toothpaste

I discovered White Glo when I was in Australia. After years of having to drink a large glass of orange juice everyday as a child my tooth enamel was severely damaged and although now my oral health is 'Ok' now I still have to be careful when it comes to whitening products. This toothpaste is low abrasion so I gave it a go and was amazed by the results. As a coffee addict my teeth are prone to staining and within just a couple of days my teeth were significantly whiter. They also feel 'dentist clean' after the first use so I quickly fell in love with it. 

When I saw a free sample a couple of months ago in my Women's Fitness magazine I was over the moon that it was available in the UK. This pack pictured I got in Boots and it came with a free toothbrush and a sample of their toothpicks that I've popped in my handbag to judge at a later dinner date. For only £3.99 you get a large tube so it's great value.

Wlikinson Sword's Quattro For Women

I never thought I would get excited by a razor, but after being let down by my Gillette razors too many times I voiced my frustration on Twitter and my followers told me to try these. Currently in Boots they have a great offer, Buy a pack of replacement blade and get the Quattro Razor free!  Cheers Boots! What a perfect opportunity to try these out and they did not disappoint! The razor itself is easy to manoeuvre  (Great for bikini areas) and it glides effortlessly over the skin giving the closest and most comfortable shave. Hair removal perfection. 

....And Kook Hates! 

I'm still jobless, the weather sucks ballsack and my MS is being niggly. Boo hiss. 

TTFN Kookskis x

What I Wore Wednesday

Yes I'm going to be sharing what I'm wearing weekly from now on. Something that I have secretly always wanted to do but as I am the 'Worst girl ever' and never out of the same old tomboy clothes I have always laughed at myself and said 'Dream on!'. 

The male thing was as fed up of this fact as I was and is currently embarking on a mission to get me confident enough to wear clothes more suited to my gender. And he's succeeding. He recently said while we were skipping around B&Q looking at all the things we need but can't afford, "I love the sound of you in heels, you're actually a girl now!" I had a good 2 seconds to myself thinking of some witty take the piss out of myself come back, but instead I just took the compliment and carried on looking at the brown plastic wall plugs with a smirk.

Today's outfit...

Ankle boots - New Look some years ago now, Aubergine skinny jeans - H&M, Long black vest - H&M, Leather jacket - Superdry, Scarf - Tommy Hilfiger at TKMaxx.

A note on the jeans. These are the comfiest skinny jeans I have ever known. Stretchy and soft and only £20! I bullied myself into buying these. I never thought I could pull them off and buying them was to me  one of the craziest things I have ever done. I was so out of my comfort zone but then I reminded myself of the fact that in the past I have had to be bullied into buying certain item of clothing and it's ended up being an all time favourite. Now I wear them all the time, especially with these boots lately as my little island has taken a hammering from rain. I wear them over the boots as I'm short and there's just too much fabric to go inside the boot. 

And a kind of close up of today's makeup, my everyday smokey eyes. 

I've learnt something today. Trying to take pictures of yourself in a mirror when your house is dark because of the miserable weather isn't fun so I apologise for the terrible quality pictures. It makes everything look terrible. Your face, hair, mood, weight, The weather just makes everything miserable. And apparently we have yet another weather warning for heavy rain over the coming days, I suspect in my next WIWW post I'll be swimming around my living room trying to take a picture. 

Little Things That Have Kept My Chin Up.

The past couple of weeks I have been in a terrible mood. The kind of mood that young children pick up from miles away and makes them start screaming in their pushchairs. If I was to look in a mirror it would crack if I couldn't punch it first. I've cried too. But, being the good girl that I am, only once did I do it into ice cream. A 98 calorie smoothie ice cream at that. Perhaps if I could've afforded it, it would have been into a tub of Ben & Jerry's. which brings me to the reason for all this Emo-ness, the fact that I cannot find a job.

I'm not going to bore you all with the lack of employment facts of living here. Let's just say it gets really old, really fast and everyone is in the same boat. Even if I wasn't disabled and could work a 40 hour week I'd still be struggling to find work. I love the island, I really do, it's just living here that's the problem. 

So I need things to keep my chin up and keep me going. The male thing does a fantastic job of that, but here are some other little things that are awesome. 

First of all there is this, my perfume. 

Especially ESCADA

You know how every so often You come across a fragrance that you just can't get enough of? You crave it, and find yourself sneakily spritzing it like a perfume ninja when you see it in department stores or Boots. Well this is the second fragrance to ever have that effect on me (don't get me wrong, Bvlgari's Omnia:Amethyste is still very much my favourite although saying that....this ones coming close...). 

For months and months I craved this scent so when I finally got my paws on it I went a little bit batshit with excitement. I don't usually like floral and fruity perfumes but this really is beautiful and one of those perfumes that you can really go mad with without it becoming gross and overpowering. I strongly recommend you give this one a whiff next time you're near fragrances. 

A new snack I have fallen in love with.

I have discovered the brilliant brand Itsu. A range of delicious healthy snacks I pick up from Waitrose as a treat. These wodnerful rice cakes not only taste delicious (for a rice cake!) but really do fill me up. I can only manage one at a time and there's 3 in a pack so they are excellent value. So want something yummy that will fill you up without filling up your calorie allowance? these are for you. 

And finally, the Bug turned 4.

Yep, that's right, FOUR. He had the best birthday we could give him and a lovely little party. He even got a little shirt that as he put's it, is "Just like Ricky!" (his hero).

He even wanted styling wax in his hair...just like Ricky...

I asked him how it felt to be 4. He didn't hold back.

How did this tiny little very poorly baby...

Turn into this four year old boy?? 

*Faints*