What You Can Do To Help 33 Year Old Amanda Jane

She's my age, she's a busy mum with a three year old child, she lives in Melbourne. And she's fighting MS. 

Meet Amanda Jane. She's flying to Russia for breakthrough stem cell transplantation. But she needs your help. 

She's hoping to raise up to $90,000 to assist with the treatment ($45k), accommodation and flights, as well as recovery time. I don't know (m)any 33 year olds with a spare $90k. So if you can support her in some small way, it will be a huge help. 

I chatted with Amanda to find out how Multiple Sclerosis has affected her, and what we can do to help. 

Amanda, two years ago at the age of 31 you were diagnosed with MS, what were your symptoms?

It took me over 12 months to finally get diagnosed. It felt like the longest 12 months of my life, 12 months full of fear and questions.

When I look back I can see I have had MS symptoms up to 5 years  - such as electrical shock feelings down my spine when I looked down and 'hot spots' on limbs for months (I now know the feeling down my spine is one of the most clear MS signals) was when I had tingling start in my feet, it slowly spread so that I had dead leg type pins and needles from the soles of my feet all the way up to my chest. I had pain and numbness in patches too. I had that for 7 months straight. It was terrible.

When my Neurologist saw my MRI he was shocked that I was standing next to him and wasn't paralysed, that was such a scary thing to hear. I was in shock and my only response was "I have a baby, I can't stop, she won't understand why I can't pick her up, I have to keep going, there was no other option".

After a strong course of steroids those feelings finally started to go away but then instead I started getting a constantly painful right eye and strange vision (optical neuritis), this was for a few weeks.

Next I was getting constant 24/7 severe headaches and migraines - it took 8 months to find a medication (that I take daily) that works to reduce them.

It was one thing after another for a straight 18 months.

What's a normal day like for you now?

At the moment, thankfully, not so bad. I have Remitting Relapsing Multiple Sclerosis (RRMS).This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear. In time it is most likely that I will transition to Secondary-Progressive MS (SPMS) where symptoms worsen more steadily over time. 

Currently I feel the best I have in the last two years. In the last 12 months alone I have had six MRI's, many, many blood tests, been on three rounds of strong steroids and countless different types of pain medications to try to control my headaches/migraines.

At the moment I am dealing with is aches and pains in my joints which is one of the side effects of a new drug I am on to try to slow progression of my MS. Last Friday I started on a drug that will mean once a month I go to hospital for a few hours for an infusion of medication.

I take daily medication for my headaches and that is working well at the moment, I only have a dull headache most days and on bad days it still isn't as bad as it was before this medication.

I have fatigue which makes me feel like I am the laziest person on earth as I never have energy to do much yet I can't sleep as I have fatigue so I am forever bone tired.

I have gone from being a person who wouldn't even take panadol for a headache to one that gets up and takes at least 5 tablets every morning and drinks magnesium citrate in a drink every night to help with sleep and nerve pain.

This is a good day, I don't even want to think about my bad days.

I can still walk unaided, I can still drive, I can still chase around my daughter....I just don't know for how long until I have a relapse that means I might not be able to do that.

For people that don't know much about MS - can you tell us how it affects you every day?

Every day I need to think about taking my medication so I don't end up with a bad migraine.

My concentration and memory is pathetic. My sister in law would testify to how bad it is, I cannot recall a conversation we had earlier in the day let alone any other day.

I get confused easily and take longer to do things than I ever used to. I am very disorganised and that annoys me as I used to be organised.

I know it is effecting my brain on a daily basis.

On days where my body is effected I even need to consider how close I park my car to the shops as I get tired walking too far. An hour at the shopping centre the other day meant I had to have a lay down when I got home.

When I had optical neuritis I couldn't see my computer properly at work and had to close all the blinds so I didn't get too distracted by how much the daylight was distracting and making it even harder to read.

At my worst I had to concentrate and think about every single step I took because I couldn't feel my feet and it was too easy to trip and fall. Throughout this time I barely told anyone so I was carrying on like nothing was wrong, that is really difficult when you can't feel most of your body.

I constantly have MS in the back of my mind, all day, every day. I am always worrying about when and what my next relapse with be and whether my daughter will one day be looking after me.

You've got a small child, it must be tough parenting while dealing with MS, how are you coping?

It is hard. At my worst it was like I was on auto-pilot. I was in pain, constant pain, yet I just kept on going. I had no other option. My husband didn't know how to deal because he couldn't 'fix' me so we just kept going on as normal.

My daughter can’t understand why I can't lift her some days - my right side of my body is much weaker than my left, so I lift her even though it hurts like hell to keep her up. I still do the housework, go to work and go to play dates etc but it is super hard some days.

In the beginning of all this I felt so alone because I looked totally fine yet on the inside my body was attacking itself.

I think it was actually good that my daughter was born when it all started because otherwise I wouldn't have had a reason to keep pushing myself on. I would have just wanted to stay in bed all day.

Soon you're flying to Russia to receive the ground-breaking stem cell treatment, what will this do?

Hopefully it will totally halt my MS. It has no promise to reverse any current damage but it could, if I am lucky, but that is why I want to go now. If I could halt it now and only deal with the issues I have now I would be over the moon.

I don't want to wait five years when I might have a more permanent disability that I would then be stuck with for the rest of my life. If I can halt my MS before that then I would be one lucky chick.

To imagine being able to go back to a life where MS getting worse wasn't a thought in my head every day would be amazing!

What can people do to help you?

They can donate to help me get to Russia, donate their time to help at our events, or to source donations or donate goods or services for us to auction off at our trivia night to raise funds. Any help is greatly appreciated!

Anything else you want to share?

Just that I hope this treatment one day is openly available to any MS sufferers in Australia. If I could pay the same amount as I have to pay to go to Russia for treatment yet have it here, I would, but that isn't an option.

I also really want to thank everyone that is supporting me and showing interest in my journey. It is totally heart-warming to see that people want to help make my dream and the dream of my family, a reality.

Visit Amanda's website to read more - To Russia - Fighting MS
Donate here

Donating Blood:: Australian Red Cross

Last week I donated blood.

500ml of it.

It was my first time.

I tried many years ago, but couldn't donate as my iron levels were too low. I felt sad.

But this time around my iron levels were ace - and I did it. I am totally pumped.

My Dad routinely donated blood for many years, I remember him coming home with a sticker that said something like 'Be nice to me, I gave blood'. Because of Dad's donations, I always wanted to donate blood too. 

I'm not really good at needles, and gave myself a pep talk to not look at anything because it makes me see stars. I am pleased to say, despite that voice in my head desperately wanting to see what 500ml of blood looks like, I didn't even peek. No stars, just a goodie bag at the end full of tasty treats. Honestly, Matt was a little jelly of the mini Mars Bar.

If you'd like to donate blood, go here. With one blood donation you could help three people. 

My Phone Died. And I've Freaked Out.

This morning everything was fine. 

I woke up. Checked my emails. Flicked through Instagram. And then my phone stopped working.

I figured it was a glitch, and that if I gave it five minutes it would be happy and working again.

Except it's wasn't. 

Then I thought maybe I hadn't attached it properly, so I put it on the charger. I thought it would be happy and working again.

Except it isn't. 

I am freaking out. 

All my photos are on that phone.

I am feeling all sweaty and stressed. Like someone is squeezing the life out of me.

HEEEEELP!

This Is Incredible:: Watch It

Frocktober 2013:: Let's GO!

If you're a long-time reader, then there's no doubt you've heard me banging on about Frocktober. And I'd love you to sponsor me. Please.

Without question, it's my favourite time of the year. It is when I get the crazies and wear a different frock for every single day of October. 31 dresses in 31 days. Except it's more than 31 dresses because sometimes I frock up to go out at night. What the frock?!

So if you've never heard of Frocktober, you're probably thinking - what the frock is Frocktober?

Well my frocking friend, it's to raise awareness and money for the Ovarian Cancer Research Foundation. Last year I raised almost $5,000. This year I'm hoping to blow that out of the water and raise even more money for this most excellent charity.

Why? Because I'm a woman. But not only that. Ovarian cancer is an insidious disease, often known as a “silent-killer” as symptoms are vague and often strike without warning. Unlike many other cancers there is no early detection test.  Consequently ovarian cancer is often diagnosed in its late stages and only 20%-30% of woman survive beyond five years as compared to a 80-100% survival rate when detected early.

So please sponsor me this month - every dollar counts, and I'd be ever so chuffed if you gave up a coffee ($5) to help me reach my target! 

I Fell Off The Cart

While we were on holidays, exercise was a bit sporadic. Well. I say that. But we did, every single day, go for big walks. We barely used the car the entire time. But I felt so bloaty and pretty gross, so in the evenings (a handful of times) I went for a longer, faster amble by myself. 

It was nothing like what I usually do. But at least I was moving. 

Once we got back, Matt, the Doctor and I - we three all got sick. It's been a real hoot. I've had the snottiest head this side of Cincinatti. 

I have, alas, fallen off the wagon. 

Someone. Lift me up onto the wagon, and give me a push.

Hit me up with your inspiration on how I can reignite my exercise flame. 

Please. Someone. Anyone. I'm Bloaty McBloaterson. HELP ME! 

You Buy Fashion Online. You Get Nothing. You Love It.

Are you hooked on shopping online? Do online purchases warm the cockles of your heart? Well get hooked on this. 

Since the devastating collapse of the Rana Plaza garment factory building in Bangladesh, which killed over 1,100 people - we've all been shocked. And hopefully we've all started questioning: how is it possible for a t-shirt to be made and sold for $5? Who makes that garment? What is the effect of our purchase on who made it? 

Instead of wetting our pants with the excitement of bargain fashion - think big picture. Who are we hurting for a quick fashion hit? 

Conceived by three digital media students from the "Digital Harvard" - Hyper Island as a reaction to the collapse, The Rana Plaza looks like a fashion store website - but the clothes and accessories don't really exist. Instead the payments are going to help ActionAid Australia with human rights programs around the world. 

Pretty cool, huh?

Make a purchase from this online store - and you'll be helping others in the process. This experience pushes for better and safer conditions for garment workers in their own countries.

KMART and Target have became the first Australian retailers to sign onto an accord to improve safety in their factories.  But this weekend 140 female garment workers fell sick at their factory outside Bangladesh's capital Dhaka after apparently drinking contaminated water, the second such incident of its kind in two weeks. Officials confirmed the workers were making garments for western labels.

Of Bangladesh’s two million garment industry workers, 85% are women and girls. Most earn the legal minimum wage of just 0.16 Australian dollars per hour. Factory workers are routinely harassed and bullied in their workplaces and denied their legal rights such as overtime, paid leave, childcare, and safe working conditions.

Catherine Esposito of ActionAid Australia said that boycotting fashion brands was not the answer - as it could lead to job losses and even more hardship for workers around the world. 

Little J Update

Yesterday there were some concerns raised about the legitimacy of Little J and the fundraising. I spent some more time yesterday morning to ensure that your donations were going to the right place. They are. 

Holly and Sam have made updates to the site overnight to keep you abreast of the situation. 

Little J is in a serious condition. His Dad flies in today to be with him and his wife. 

If you can donate, in some small way, this can help their family be together at such a difficult time. 

So while we are diverse in geography, we can rally to be a community and help. 


Image via Katie Daisy
Visit The Wheatfiled by Katie Daisy Etsy Store

From One Mother To Another:: Please Help Little J

From one mother to another, I implore you to support this initiative in whatever way you can.

I received an email this morning - and as soon as I read it, I knew I had to share it and spread the word as much as I could. 

Please, please help if you can. If everyone donated $5 - it would make a big difference to a family that needs our help, love and support at this difficult time. 

----------------------------
Holly is  a volunteer who provides personal aid to families with terminally ill children on a regular basis - when the parents need a stand-in to keep their child company or have somebody babysit their other children so they can spend the night at the hospital, she is there for them. Holly does this in addition to working a part-time retail job and also studying for a masters in psychology.

One of Holly's charges, J (pictured with Holly in the attached image), has just in the last couple of days taken a turn for the worst. J recently had a bone marrow transplant and recovered from leukemia but due to complications with an infection was been moved to to an intensive care unit yesterday and likely does not have much time left to live.

The saddest part of the story is that J's dad is a self-employed truck driver who works in NSW, and despite knowing that his 2 year old son has very little time left, has to continue working in order to avoid losing his business and their home.

Going above and beyond, Holly has taken it upon herself to try and raise money for the family to help give J's father a few weeks off to spend what could be the last precious days with his son. I've given all I can and spread the word to all I know and implore you to do the same. Even if you can't donate, you might be able to help by sharing, tweeting, telling your friends and family.
------------------------------
If you can help, please donate to make these next few weeks a bit easier for J and his family. 
  
EDIT:: Following some concerns regarding the legitimacy of the Little J fundraising, I can confirm it is legit. The page was set up in great haste, it isn't perfect, but it is fundraising for a family in need.

Lovers. And Hey It's Your 7th Wedding Anniversary. You Love Copper. Right?!

image source

you could buy this beautiful copper colander here

Matt and I are celebrating our seventh wedding anniversary next week. And wedding anniversaries always leave me in a quandary. 

Who the heck came up with the random meanings attached to the number of years you're married?

Last year was sugar. This year it's copper.

What the Hector am I meant to get my husband that's copper, besides going to CopperArt (is that even still open?), a copper bracelet to fend off arthritis, or a copper saucepan. Enter the snoozefest. 

Last year it was sugar. And if you know Matt and I, we already have a sweet tooth. So that was out. But instead we were at the markets, I spied a vintage sugar bowl - and though (sugar) snaps! And we bought it. Simple, practical, and very much loved. It happened to also have a man and a woman on it. And a cat. One day we will have a cat. When we brainwash our landlord. 

Copper piping? The single of Copperhead Road? 

Has anyone got any inspiration to share with me? 

A private show by David Copperfield?

A hot copper?

Or maybe, while in bed, totally neeeeewd, I'll turn over to my husband, present him with a gift box, he unwraps it, and inside is this... er.. Swarovski Squirrel. Everything he could ever hope for.

If you have any uber bright ideas, please do share with me. I am all ears. Someone help me. I need your help! Actually, we're going small. We'll find something small again together. 

Happy Mandela Day:: Ladies, This Is Your Call To Action

Today is Mandela Day.

What does this mean? For 67 years Nelson Mandela has dedicated his life on working to correct human actions that have led to poverty. Nelson Mandela continues to fight the good fight and change the world.

Today, to celebrate Nelson Mandela's 67 years, Dermalogica are hoping you can direct microloans to women who need a hand. You can be a change maker in the click of a button. All the loans are fully funded already - all you have to do is click to make someone's life completely different.

Please go online by midnight today - we're trying to direct 670 microloans today!

Did you know
* 66% of the world's work is done by women, yet...
* 70% of people below the poverty line are women
* 1% of the world's land is owned by women

You can learn more here about the important role Dermalogica is playing in helping women in poverty and empowering women entrepreneurs. Their joinFITE community and initiative has already funded over 14,000 women and businesses.

Click here to play your role in directing a loan. It takes seconds to make a change!

Together we can empower 670 women around the world who are less fortunate than ourselves to make changes to their lives. That's pretty damn powerful. GO!

* I have put so many links in here to make it as easy as possible to click through and change a woman's life.

Make Kony Famous: Kony 2012

Ther'es nothing more powerful than an idea.
Get involved. Let's make this revolution happen.
Get on Twitter, share it on Facebook, yell it from the rooftops, plaster it up on your local walls, chat around your water cooler.

Keep Aaron Cutting

image courtesy of Getty images. Photograph taken by Dan Kitwood

A resident of Tottenham for 41 years, 89 year old Aaron has been devastated by the damage to his livelihood following the riots.

He arrived back to his shop where it had been smashed up, hair dryers looted, even his kettle stolen.

If you've got a little bit of dosh you can help Aaron get back cutting. That's cool.

You can read more here to help keep Aaron cutting.

Help Me Help You

So in a couple of weeks I'm doing a little talk at a conference. It's about PR. And PR agencies/consultants and the world of blogging and bloggers.

Secretly I am hoping no one turns up, because every time I think about it, I feel really, really queasy.

Nevertheless, I am doing a little research beforehand. Whether you read blogs, blog, or are new to blogs, I'd value your feedback. But I'm not doing some hardcore survey, because:
a) I just don't have the time
and
b) neither do you

Let me cut to the chase. I'd love it if you had a spare five minutes, if you can tell me:
- If PR agencies contact you: what works? what doesn't?
- What do you love?
- What do you loathe?
- How many companies contact you per week?
- Do you ever get any really random requests?
- And does anyone ever nail it - like really hit the nail on the head, and get you and your blog, and how to work with you?
- As a reader: what works for you? And what are you sick of?

Or if you're more comfortable emailing me, that's ace: lexipmm (at) gmail (dot) com

I'd appreciate any insights you can share with me - and if you comment on here, please don't name any agencies or companies.

Help me out peeps!

Small Joys for Japan

The collection has well and truly started! Thanks to those who have already donated beautiful softies to be sent to Japan. If you are planning on making or buying and donating a soft toy to be sent to Japan - please let me know!

One of my rad friends designed this button - so if you'd like to add it to your blog, and fly the Small Joys for Japan flag - please do!

Thanks for the support so far, and if you've even contemplated donating to help a small child in Japan - please take a step forward and do it!

Everybody's Doing It

Ok peeps, so listen up - we now have three drop off points throughout Australia.

Here it is:

SYDNEY
Calico & Ivy
10 Birchgrove Road
Balmain, NSW 2041

PERTH
Calico & Ivy
10 Glyde Street
Mosman Park, WA 6012

BRISBANE
(lovely Danielle) @
Hello Owl
43 Miles Street
Bald Hills, Qld 4036

EDIT:: (New drop off location)
ADELAIDE
Nest Studio
147 Magill Road
Stepney, SA 5069
(Thursday to Saturday: 11am - 3pm)

**************************************************************************************************
What can you do? Donate a handmade or new soft toy for donation to a child in Japan.
Why? A soft toy can say so much, plus they're a great comfort to children who have been traumatised and who have nothing. A cuddle with a soft toy can bring a sense of comfort to someone in need.
How? Stitch one with love, or choose one with your heart. All donated toys will be sent to Save the Children in Japan for distribution.
When? Now! Time is of the essence.
Who? Who's doing it? Amy @ Badskirt. Lisa @ The Red Thread. Cath @ Chunky Chooky. Cindy @ Bug & Pop. Anna @ Hey Bubbles. Kelly Louise @ A-tisket, A-tasket. Jess @ Teddy Bear's Wednesday. SpectacularFairyWren. June @ I Sew Cute.
What else? The girls at Calico & Ivy Balmain are available to help if you need some guidance with stitching your own softie.

Can you help bring a little joy to a little person?

Soft Toys For Little Girls & Boys: Japan

I've been giving the collection of soft toys some more thought - and I'm going to do it properly.

Before I spoke to Jac yesterday, I knew I really wanted to help those affected in Japan. After speaking with Jac, it gave me that direction of how we can make a tangible difference together. And it might seem like it's been natural disaster, after natural disaster, and you might be suffering from charity fatigue, but we can make a small contribution to help in this traumatic time.

And then I chatted to my sister today - and she's offered Calico & Ivy (Balmain AND Perth) as a drop off point for anyone interested in sending a soft toy to Japan.

And then Amy at Badskirt has very generously committed to donating some of her beautiful creations. 12 to be exact. 12 beautiful softies to wing their way to Japan.

So this is the plan. You can donate new and/or handmade soft toys. If you would like help making your own soft toy to donate - the girls at Calico & Ivy are available to help you. They are creative geniuses, Sarah, Amy and Donna, and by proxy, so will you be!

If you would like to donate and help give a small child in Japan some comfort, you can send your soft toys to:

Calico & Ivy
10 Birchgrove Road
Balmain, NSW 2041

Calico & Ivy

10 Glyde Street

Mosman Park, WA 6012

image via Amy at Badskirt

Oh Japan

So I had a quick chat with Jac at Operation Angel yesterday. She is amazing, inspiring and awesome - I came off that phonecall feeling so in awe.

Given her background (you can read more about her here) she has some unique insights and gave me the heads up on what's needed in Japan right now.

If you are crafty and clever - maybe you could stitch up a softie to be sent to the children who have been affected by the catastrophe in Japan? Jac mentioned that for children - it's important that they can still be children, and that there are provisions in place to let this continue - a safe place for children to play - while their parents can work out some sort of plan. It might not sound like much, but a soft toy can provide comfort to a small child. I had some other thoughts such as a pencil case full of coloured pencils and notepads, stickers, perhaps these could be useful? I'm just throwing ideas into the air - maybe someone will catch an idea and make it grow? Or we can work together? A merry band of bloggers?

Other ways you can help:

Save The Children

CARE Japan

UNICEF

Baking & Writing

Are you looking for other ways to help? Gosh I just keep coming across some of the most amazing things. People are so clever. Baked relief? Amazing

And check out the good folk over at Authors for Queensland. If you love writing, reading or are just a word nerd, then this is the place for you. Check it out homegirls!

Like A Noticeboard

I've just been reading about the mixture of tragedy and triumphs throughout the Queensland floods. I feel completely shattered, and can't even imagine how those who have been affected are feeling right now. One million times worse.

I'm going to grow a list of ways you can help during this devastating time. There are so many great ways you can help, and as with the Victorian bushfires, it's going to be a long time 'til recovery.

PLACES TO CHECK OUT TO HELP PEOPLE AFFECTED BY THE QUEENSLAND FLOODS:

Mon Petit Poppet - toy drive

Make It Perfect- updating on Monday with lots of auctions

Chunky Chooky

Yardage Design

Ric Rac

Evaporaid (on this Friday)

Onya Magazine (details of event to be posted today)

Bondville

If you want to link to this post, or know of something that I should add, please let me know! Let's consider this a community pinboard of sorts.