Tysabri or not Tysabri?

Hi all,

Firstly, can I just say how nice it is to get comments from people who read this blog saying that it cheers them up or they can associate with what I am saying. It is reassuring that there are people out there going through the same thing as me. I am always surprised that anyone reads this, I mean who wants to read about my life!!! But I love writing it....so long may it continue!

Secondly, as the title may suggest, I have been offered Tysabri. My MS has been 'highly active over the last year or so, so I am now eligible for something stronger that is hopefully going to stop the progression of my MS. But I know all these drugs are not without their side effects. I have to see my Neurologist and have another MRI scan before they can confirm I can have Tysabri. They want to check my brain to see that I have more lesions showing than last time, otherwise I am not eligible for it! I think that we are pretty much decided that if ok with all my checks, I am going to go for it. I want to give myself the best chance of fighting this disease.

Occupational Therapy have been back out to visit. We are now going to apply for a grant to extend the shower (so we can get a seat in it) and a stair lift. A stair lift would just mean I can go up and down the stairs with Ava and feel safe and not use up all my energy going up and down them! My MS nurse suggested I get a scooter to get out and about but I am not sure I am ready for that yet. They're for old people in my mind!!!!!!! I'm sure I'll come round to the idea sometime!











Photo update of Ava for you all!

Em xxx

My saviour...the perching stool!

It has only been 10 days since I last posted.....my resolution is still going strong! Occupational therapy came around to assess me and I have now got a few gadgets to help me. My favourite thing is my perching stool for the kitchen. It means I can cook, wash up and make Ava's bottles without having to prop myself up somehow! It means that Nathan doesn't have to do EVERYTHING! I also have a handle fitted in the toilet to heave myself up and they wanted to put an extra banister in but because these new houses all have plasterboard walls, they couldn't put one in (guess I'll have to save up for a stair lift!!). I also have a bath lift as the shower seat I wanted didn't fit in the shower. This is good, but those of you with MS will know that the heat from a bath is not great for the legs (well in my case anyway!). So longer term, they may look to extend and lower our shower so it is level to the floor and big enough for a seat. So all in all, I was very impressed with the help I received.

My darling daughter is just starting to wake so I'd better go and get a bottle ready for her. Just wanted to wish my mum a happy 'special' birthday for yesterday...although I did see her!
Em xxx

New Year's Resolution

Happy New Year to you all! As the title suggests I have a New Year's Resolution relating to the blog......to write posts more frequently. I feel very guilty that my last post was on November 21st as we are in January now. Oops! Well, where do I start?

Lets start with Ava. She is now nearly 3 months old and I can't remember life without her. We are getting smiles and giggles every day now and she can sleep well when she wants to! She was completely spoilt at Christmas, but thank goodness she didn't have many more clothes as she still hasn't worn all the clothes she was bought when she was born! This is a picture taken on Christmas Day:

My MS has not been great since she was born but I am thinking positive and hoping to build up my strength with physio and swimming. I have been injecting Rebif for a couple of months now and am still getting headaches occasionally through the night. They say to take paracetamol and sleep through the night but that is easier said than done with a 3 month old baby! I am also getting slight skin reactions around the injection site but they are nothing to worry about. My first blood test didn't show up anything so they are happy with the way my body is responding to the Rebif. I have had a second lot of steroids since Ava was born and I had another good reaction to them....but have since noticed the symptoms coming back again. My walking is pretty unsteady and I can't walk very far. The physio team think my balance is poor because my core stability has taken a battering with the pregnancy. So I am hoping that the exercises I am doing will help. I also went swimming last night for the first time since September and really enjoyed it. It was an effort to get ready, get into the pool, get dressed after and walk back to the car but I think it was worth it.

I am having a visit from occupational therapy today who are going to assess me and see if I need any equipment to help me around the house. I know they are bringing me a shower seat (as I get so hot in the shower I can hardly stand) and a perching stool to use in the kitchen. This will mean that I can make the bottles for Ava and cook tea without worrying about falling over!

I always read back through my posts when I've written them and I can never remember writing what I've written. It always sounds like someone else writing..not me! Anyway enough waffling,

Em x

How do I turn my photo around?

As the title suggests? I don't want to give you all a sore neck looking at the photo but I can't figure out how to turn it around! Any suggestions?

Thanks xxx

1st Rebif Injection

Hello all,

Sorry for the lack of update but our laptop charger has been playing up and I have been struggling to even load the laptop up. Well Ava is now 5 weeks old today and we can't imagine life without her. She is settling a bit more at night and giving us a little more sleep now which is good.

I had steroids when Ava was a couple of weeks old and they really helped my legs and balance. I now must work with the Physio team to build up my strength to improve them further. The physio team was really impressed with me when they came out last week...they thought I may be worse than I was, as I ended up having a c section. I also started my rebif treatment a couple of weeks ago. I have been on 8mg and go up to 22mg tonight. I was pretty scared about doing the first injection....but it really wasn't as bad as I thought it was going to be. Fingers crossed, I haven't experienced any flu like side effects, I'm just getting slight bruising and skin reactions around the injection sites. I will keep you updated on how the increase in the dose goes.

The laptop is dying again so I will be back when I get a new charger!

Em xxx

Ava Grace Richards

Hi all,
Just a quick message to announce the safe arrival of Ava Grace Richards. She was born on October 17th at 02.25am weighing 6lb 110z. Had a bit of a long labour ending in an emergency c section but she is fine and I am recovering well. Have had some steroids to help with the MS this week already so when we're a bit more settled, I will write in more detail.

Love Em & Ava xxx

3 and a half weeks to go......

Hi all,

Not long now til baby Richards makes and appearance....and I am so excited! I took that picture this morning and noticed how strange the bump shape is. It may be something to do with baby lying bottom down (breech). We had a scan at 34 weeks to check the growth and everything was fine but we found out that baby was the wrong way around for delivery. I have since seen 2 different midwives and neither can tell which way baby is lying.....so if they haven't got a clue neither have I!

My legs have really not been working so well and getting less efficient the bigger the bump gets. So we are seeing our consultant on Oct 14th to find out if the little monkey has turned. If not I will be booked in for a c section. If it has turned they may try and start contractions for me as baby will be counted as full term by then (37 weeks). So we may meet baby Richards sooner than we first thought.

So, the MS side of things...as I said my legs have been the main problem. They are very tight and crampy and my balance is not great. I still also have my numb face which frequently gives me a headache or toothache. I am hoping to have a course of steroids when baby is out to help reduce these symptoms. I also had my first delivery of Rebif today ready to start treatment after the birth. That was quite scary...makes it real that I will have to inject myself soon.

I am under strict instructions from Nathan not to do anything around the house, which is lovely but also driving me insane!!!! I am officially sick of daytime tv having been off work since the school holidays in July. So I am signing off, which may be the last time before baby is here...watch this space.

Em xxx