Tag Archives: Health

Share Your World – Week 5

04 Feb 16
Megan
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The questions this week have been very thought provoking and I’ve struggled with a few of them but here we go… Let’s Share Your World!

If you had a shelf for your three most special possessions (not including photos, electronic devices and things stored on them, people or animals), what would you put on it?

I don’t really focus much on ‘stuff’ and ‘possessions’ any more so I’ve struggled to think of 3 things that would go on the shelf.

I would definitely include my childhood teddy. He’s been through everything with me and he’s not going anywhere…

2014-12-16 18.55.58

The second thing I’d put on it is the old cigar box that currently holds my yearly letters to E. Starting from our wedding day I’ve written a letter to him each year as part of his anniversary gift.

The third thing I’d add would be my special jewellery… My engagement ring (was my great grandmothers) and wedding ring, my heart necklace (6-month dating anniversary gift from E) and my crystal necklace (also a family heirloom).

If you had a box labelled ‘happiness’, what would you put in it?

NOTHING, or a note that just says ‘Be Present’. I would use it as a reminder that happiness comes from within, not from external sources.

What do you want more of in your life?

I’m very happy (or as happy as I can be) with my life at the moment but I’d be happy if I was able to have more family time and less pain/health issues.

Daily Life List: What do you do on an average day? Make a list of your usual activities you do each day.

An average day… I was planning to do a day in my life style post like my friend Joy and Toni Bernhard anyway so I guess I’ll describe it here.

Wake Up time… Generally between 8 and 9 am (although the last few days I’ve woken earlier then fallen back to sleep). At this time I take a moment to scan my body and see what parts are hurting the most and the least (there’s never no pain so it’s more an assessment of how well the day is going to start).

While still lying in bed I do at least a 5 minute meditation before stretching and slowly sitting up. Most days I’ll take a shower (sitting on the floor to avoid falling over or making pains worse) and get dressed.

Breakfast is the next task to address. I make a cup of tea and see how much energy I have. Most days I just have a piece of fruit or something premade that’s easy to eat. When I have the energy I’ll make a cooked breakfast with veggies and eggs.

While the kettles boiling (and breakfast is cooking) I’ll do a short sun salutation. Just 5 minutes is enough to stretch out my muscles but it also wears me out again.

After eating breakfast it’s time for another rest so I’ll sit on the couch drinking my tea. I may browse Facebook on my phone.

After 10-15 minutes rest, I’ll read through some blogs for up to 30 minutes (usually closer to 15 minutes) then push the button that sends the robot vacuum on a round of the kitchen/family room and laundry.

I’ll clean the litter trays and then assess how I’m feeling.

If it’s a good day I’ll do an hour or two of work (writing blogs, working on consulting jobs) or spend some time cleaning up around the house with regular short rest breaks in between. If it’s a bad day I’ll put the tv on or listen to an audio book.

At around 11:30 I’ll start thinking about lunch. Generally this will either be left overs or a sweet potato which I throw in the oven with salt, pepper and oil and leave to bake for an hour.

After lunch I have a nap before either doing a bit more work/housework or putting the tv/audiobook back on.

Around 5 I start considering dinner. I slowly make dinner taking lots of rests and by the time E is home (generally between 6 and 7pm) dinner is ready to eat.

We eat and watch tv until around 9-9:30 when I take my medicines, floss and brush my teeth, shower and bed.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful that I’m able to live a slow life. Over the weekend E and I were able to slow down and just relax. I spent a whole morning listening to audiobooks while E was on the computer and doing things around the house, we visited family and we went for a slow walk in the local national park.

This week I’m looking forward to continue living slowly. Taking the time to enjoy the simple things like the warmth of the sun and the sound of the rain. I’m also looking forward to afternoon tea with Rach as a special mid-challenge catch up as part of our 20 week no-buy challenge.


A simple wardrobe with chronic illness

02 Feb 16
Megan
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Another week down in the No Buy Challenge and another week of sticking to the goals. I’ve decided that instead of focusing my posts on the challenge each week (I will if there’s anything to update you on) I’d start doing some of the other posts I’ve been planning with just a short update at the beginning for the challenge. So, as promised in earlier posts, today I’m focusing on my simple wardrobe.

Over the last few years I’ve become increasingly interested in reducing ‘clutter’ in our house. With limited energy, my ability to maintain the house to an ‘acceptable’ standard of cleanliness had dropped. All too often there were items lying over every conceivable surface in the house, washing piling up (dirty and clean) and dishes in the sink.

As part of my year of ‘Enough‘ last year, I spent a considerable amount of time removing a lot of the things and stuff that had built up but wasn’t actually needed, useful or loved. I have focused mainly on my own things, hoping to lead by example for E so my wardrobe was one area that got regular attention and I’m quite happy with the result.

There are many, many posts out there about how to create your own minimalist wardrobe, check out:

This is how I’ve modified the guidelines I read to suit my lifestyle and preferences.

An initial culling

When I first began my wardrobe clean out I pulled everything out of the cupboard and tried it all on with Janelle (my trusted friend) to assess what I liked and actually fit well and looked good. Anything that didn’t meet any of these criteria either got donated or thrown out depending on the state they were in.

Chose a colour scheme

I chose two main neutral colours – black and grey (I do still have a few white and brown items but mostly black and grey) – and two spectrums of accent colours blue/green and pink/purple. Anything that didn’t fit these colour schemes were donated, apart from my orange coat (A honeymoon purchase and my favourite winter coat).

Turned my coat hangers backwards

Last year I turned all my coat hangers around and only flipped them when I wore an item, anything not worn at the end of the year was donated. I found that all my short sleeved shirts are now gone, I tend to wear blouse style tops if I wear my suits, and I only have one long sleeved shirt.

Thanks to this process I now have room to hang everything, including jumpers, t-shirts and bottoms (were folded last year) so I’ve turned them all around again this year so I can assess how many of these items are actually worn throughout the year.

Pay attention to how I feel in each item

Throughout the year I donated several more dresses because they just weren’t comfortable, either they were too tight or they had zippers/buttons on them that were just not comfortable against my overly sensitive skin (a symptom of my Fibromyalgia).

Pay attention to what I wear most

A lot of the guides for minimalist wardrobes recommend X number of tops, X pants, X dresses, etc. This idea didn’t work for me.

I’ve found that because my tummy can (and does) bloat daily – going from almost flat to looking 5 months pregnant by the end of the day – I tend to wear dresses more often than any other item of clothing. I hardly ever wear skirts, jeans or pants any more – anything with a waist band that isn’t stretchy really.

As a result I only have one skirt, one pair of jeans (maternity jeans), two pairs of shorts (one stretch cotton), a pair of maternity leggings (worn almost daily in winter). In comparison, I have 9 dresses.

I also get really cold quickly so I have more items that I can layer such as cardigans, jackets, etc.

From 2 drawers + hanging to just hanging...

From 2 drawers + hanging to one row of hanging (shirts in foreground are E’s)

 

This wardrobe suits my life with chronic pain, limited energy, and daily fluctuations in body shape (bloating).

Maintain

To avoid a recurrence of wardrobe ‘clutter’ I’ve established some guidelines to maintain my wardrobe:

  • One in one out (for every new item that comes in an old item needs to leave the wardrobe)
  • Stick to colour scheme (any new items need to fit with my colour scheme)
  • Natural fibres (no wool) – my preference is for cotton or bamboo, I’m allergic to wool so none of that
  • Pockets! (Over half my dresses now have pockets and I’ve made a decision that any new dresses need to have them, this helps dramatically with reducing what comes in because there aren’t that many out there that do)

What items of clothing do you find yourself drawn to most days? Do you think you could live with a minimalist wardrobe?

Share Your World: Week 4

28 Jan 16
Megan
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I can’t believe it’s almost the end of January already and we’re up to week 4 of Share Your World 2016 !

So far this year I’ve been struggling to maintain my balance. If I look at it from a week or month point of view I’m doing ok but on a daily basis I’m still struggling. Some days are crashed on the couch and unable to do anything much other than listen to an audio book or the tv in the background. Other days I’m rushed off my feet trying to do appointments and out of the house activities… I haven’t worked out the balance there yet.

It’s difficult for me to work out how to do this properly because I see the benefit of not having to drive more than once or twice a week (it’s still an activity that wears me out a lot) but then it means those days I am out I don’t manage to pace my step count, I don’t get my usual rest breaks, and I just over do it in general.

I’m also struggling to get any sort of regular routine in place for work activities. I’d love to be doing at least a minimum amount of work each week but Foggy Frog seems to be my constant companion again and he’s making it very hard for me to do anything for more than 5-10 minutes at a time with any hope of having reasonable results.

How do you pace yourself with activities outside the house or with adding in any work?

Anyway, being Thursday today, it’s time for another round of Share Your World.

Share Your World – Week 4

What one thing are you really glad you did yesterday?

Yesterday was one of those super full days where I over did it. That doesn’t mean there weren’t things I achieved that I’m really glad to have done though…

I managed to make it in to town to have lunch with E and one of his work colleagues before heading to the meeting I had in the afternoon. This is something that I really enjoy doing as it doesn’t happen very often these days unless I have a medical appointment in town.

Are you generally focused on today or tomorrow?

I do have a habit of focusing on things that I feel are important or scary that might be happening in the future but these days, thanks to the uncertainties related to my health, I’ve gotten a lot better at just focusing on one day at a time. Most weeks I don’t even look at my calendar in advance unless I’m booking something in. I might check it the night before when I’m getting ready for bed or when someone asks me what I’m doing.

Would you want a guardian angel/mentor? What would they tell you right now?

A mentor (or several mentors) provides inspiration, advice and guidance to help you succeed the best in life. Yes, I’d want that in my life and look up to several people in my life now as mentors.

Right now my mentor would be telling me to remember to be gentle with myself. As you might be able to tell from the last few posts I’m feeling very frustrated about my limitations at the moment. I’m wanting to do way more than my body will actually allow and I’m struggling to accept it. If my mentor was here right this minute they’d be reminding me that my health is the most important thing, without it I can’t do anything. They’d be telling me to continue to listen to my body and rest when I need to, to accept where I am at the moment, and to not set unrealistic expectations for myself.

Would you rather live in a cave house or a dome house made out of glass? (photos of the houses found on google search)

I love the idea of both but my dream house would be a dome house that’s built into the ground with lots of glass… something like this.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful for the understanding and support of the wonderful people in my life. I realised in the last few weeks that I’m not going to meet my deadline for one of my consulting jobs. When I contacted the client to let them know they’ve been very understanding and said there is no rush and to just work on it as quickly as I can.

Being able to spend time with my friends has also been very satisfying.

In the next week I’m looking forward to talking with my doctors about some test results I got in the last week and hopefully getting some guidance on how to approach the issues that have arisen (More to come in an upcoming post on this).

Week 7 No Buy Challenge: Celebrations, side effects and PEM

19 Jan 16
Megan
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Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch... Water and tea, tablet and headphones, tv controller...

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

  • I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
  • High levels of pain down the inside of my limbs (especially my left leg).
  • Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?

Balance #OneWord2016

04 Jan 16
Megan
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Last year I chose one word to guide me through the year… Enough.

I’ve recently found out from The Bloggess that there is a #oneword2016 Challenge and seeing I was already planning to choose a single word, I’ve decided to participate. The one word you choose is meant to be something that will help you focus on your main goal for the year.

Enough did that for me last year. There were many times when I felt I needed to do more or buy more items. Most of these times I remembered my word and felt better about only doing what I could or reducing the items I had rather than adding to them.

This year, I want to keep up the focus on the benefits I’ve received from Enough but focus more strongly on being able to increase (or at least better BALANCE) my activities.

I’m going to continue focusing on moving towards a simple, sustainable and meaningful life with a strong focus on finding ways to BALANCE my needs and wants. I’ll continue to try and single-task, try to get a good BALANCE of health, work, and social activities, and relaxation into my day/week.

If you haven’t worked it out yet, my word for 2016 is BALANCE.

I haven’t planned out the whole year but I have a lot that I want/need to achieve in the next 6 months so I’m focusing on that and trying to break it down into monthly and weekly activities…

In the next 6 months I need to:

  • Complete my current consulting jobs for different local Council’s here in SA:
    • Biodiversity Trails – due end of January
    • Environment Action Plan 2016-2019 – due April/May
  • Complete my Certificate IV in Training and Assessment – due by end of May
  • Publish Foggy Frog and the Pain Gang Picture Book – we’re so close but it seems to take so long to get it all together!

On top of these tasks, I have several appointments as part of the ongoing management of my health and I want to have regular time with family and friends and build up my casual work a bit as well.

As you can see, there’s a lot going on so it’s going to be an effort to find ways to balance everything and continue to pace.

Tomorrow, I’ll give you an update on how I’ve been going with the No Buy Challenge the last few weeks. Let’s just say now that I’ve realised there were a few things that should have been on the exceptions list that I forgot, so I’ll be updating that tomorrow.

Do you have one word that’s going to guide you through 2016?

“You’re looking good”…

10 Dec 15
Megan
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I’ve lived with chronic illness to some extent my whole life but for the last 2 1/2 years illness has been a major contributing factor in my life.

One thing I’m noticing more and more as I learn to accept, and live with, my chronic illnesses and the disabling symptoms they impose on my daily life is the innocence and ignorance of many who do not suffer from them.

It’s not only what’s happening in my life, but what I hear from others online and in person who are also suffering from invisible chronic illnesses.

The key word there is INVISIBLE…

Whenever I meet people in public I’m asked “How are you going?” or told “You’re looking good” and when I hear these things I never know how to reply.

On the outside I look like any other healthy person.

I walk normally most of the time (no obvious limp) although this can be difficult when I’m in a lot of pain or when the fatigue is so bad that my legs feel like lead weights. I look bright and happy (because I am happy) even when inside my body is screaming at me and my brain is in a dense fog.

Yes, I may ‘look good’ but I don’t feel good but I don’t want to be a downer for everyone around me so I don’t necessarily want to tell people I feel like crap.

How should I respond to these comments and questions?

I’ve seen different responses online from others going through the same thing.

Some people keep all the pain and suffering inside. They tell others they’re fine and try to ignore what’s going on then get upset and angry at the people asking the questions because they don’t understand.

Others tell anyone and everyone what’s going on with them. This can lead to people getting frustrated at you. People can begin to think you’re not really as sick as you say you are.

Personally, I think something in between is the best road to take. When answering questions or talking to people about our health we should take into consideration who we’re talking to and what their relationship is with us.

Even those closest to us don’t need to be constantly told what we’re feeling. Yes, they need to understand but we also need to understand it can be hard for them to cope, especially if you fell ill after you were close.

Responding to “You look good”

If I don’t know the person at all, I’d just reply ‘Thank you’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘Thanks, I don’t feel that good’.

If I’m close to them I might share more detail about how I’m feeling, especially if how I’m feeling will impact on what we’re planning to do together.

Responding to “How are you?”

If I don’t know the person at all, I’d just reply ‘Fine’ or ‘OK’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘As well as can be expected’. If they’re interested I might go into more detail afterwards.

If I’m close to them, I’d give a similar answer to above but would usually give them more detail.

How do you respond to well meaning but difficult questions and comments?

The Difficulty of Pacing: Work

03 Dec 15
Megan
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I’ve been so excited to hear from you all about your thoughts on the most recent A-Z guide to a simple, sustainable and meaningful life. One of the questions I’ve been asked to share more about is how work fits in to pacing with a chronic illness.

One reader in particular approached me with her current situation and I could see a lot of similarities so I wanted to talk about the issue in more detail.

This lady has ME/CFS like me. I’ll let her share her experience in her own words (modified for privacy):

I’ve been working on trying to get my activity level up for a while now but have only been keeping track of my daily steps for about a month. At the moment I seem to be averaging about 4000-5000 steps a day which I’m really happy with. I think a couple of years ago I would’ve been lucky to average 1500-2000. My main problem at the moment is that my step count is very inconsistent. It can vary anywhere from 2000 steps a day to over 8000 a day depending on the activities I have on.
I’ve now been back at work for just over 3 months… I’ve only been doing short shifts (3 or 4 hours) but these shifts involve being on my feet and walking around for most of the time. This makes it hard for me to pace myself and on a work day I don’t think it would be possible for me to keep my step count below 8000. I then find that the day after I have worked I’m exhausted and my step count is very low.
The issue here is the inconsistency. It’s something I can relate to strongly, on the days I need to go out of the house I tend to find myself doing double or more steps than on the days I’m home and can pace myself. I’ve also found it harder to avoid crashes since I’ve started working regularly.
My exercise physio has made it clear to me that the most important thing in order to avoid crashes is to be consistent. As the reader above stated, this isn’t always possible. It’s difficult to maintain a consistent level of activity when you have to do more on certain days due to engagements you can’t (or don’t want to) avoid, things like doctor’s appointments, work, important social events.
One thing I’ve done to try and help with consistency, is to consider it more on a week or monthly basis (rather than a day by day basis). That is, like the reader above, some days I do a lot more but I balance that out by doing a less on the other days.
I’m not completely happy with that approach though because some days I’m doing less because (like today) I literally have no energy left. What I’d like to do is find a way to pace so that even though I do more some days and less on others, I’m not doing the less because of crashes. I want to be doing it because I want to.
Pacing is about setting base levels and sticking to them for as long as necessary before slowly increasing them.
Since I’ve started working again, I aim to do a minimum of 5-8 hours a week. I break this down into smaller time slots. Some days this may be an hour at a time, other times (like today) it’s in 5-10 minute blocks…
I’m lucky in that most the work I’m doing I’m able to do from home and sitting down, but I still need to pace myself. I need to find the right balance of mental and physical activity to maintain my health.
In an ideal world, we’d be able to only work what fits with our health but in some roles (as with our reader) there are minimum shifts that you can do so if you’re going to work at all it’s likely to be too much to start with.
In response to the reader’s concerns I’d like to offer some advice…
If it’s possible to take short breaks, or even just ask for a stool at the counter (if you’re in customer service), that would give you a chance to pace yourself even within your shifts. However, knowing the area you are working in I know that the workplace isn’t always willing to be that flexible.
From what you’ve said to me it does sound like you are doing the best you can in your situation. It’s great that you’re tracking your activity levels and maybe you could look at working out what your baseline is.
How do you pace?
If you work, how do you manage the difficulties this can raise?

A-Z Guide to a simple, sustainable, meaningful life

01 Dec 15
Megan
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Thank you for joining us on this journey towards more simple, sustainable and meaningful lives.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

For more information on each point of the A-Z Guide, please click on the links below.

A-Z Guide

is for Acceptance

is for Budget

is for Community

is for Delegate

is for Enough

is for Faith

G is for Give

is for Health

is for Inspire

is for Joy

is for Know

is for Learn

is for Mindful

is for Needs

is for Outdoors

is for Pace

Q is for Quality

is for Reflection

is for Space

is for Transform

U is for Unplug

is for Values

is for Wonder

is for eXperiment

is for Yes

is for Zero

Have you taken steps towards a simple, sustainable and meaningful life?

Z is for Zero

30 Nov 15
Megan
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Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we have been exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Thank you for joining us on this journey towards more simple, sustainable and meaningful lives. Over the last month we’ve talked about a lot that we need to continue to work on over time if we’re to succeed. Today we finish up by looking at Z… Zero.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

Z is for Zero

A simple life is one in which we’re aiming for ZERO (or as close to zero as we can get).

We’re aiming for zero stress, disappointment and waste (time, money, things).

If we’re realistic we know that this isn’t doable but it’s good to set our goals high. Each and everything we’ve talked about over the last month are small steps towards achieving this goal.

My ZERO includes reducing the negative impact I have on both those around me and the environment. That’s because this fits with my values, it may not fit with yours.

My ZERO means trying to live by Bea’s 5 R’s – Refuse, Reduce, Reuse, Recycle, Rot.

My ZERO also means learning to compromise. My husband’s values may not be exactly the same as mine. At times I compromise on waste coming into our home to meet his values as well.

My ZERO means spending as much time as possible with my family and friends, helping others as much as I can through my work and what I do in my spare time, and spending time by myself to focus on healing my body.

My ZERO is a life in which I feel needed, loved, supported and cared for.

What is your ZERO?

Y is for Yes

29 Nov 15
Megan
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Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at Y… Yes.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

Y is for Yes

Say YES!

To looking after yourself.

Photo (c) E. S. January, 2014

Photo (c) E. S. January, 2014

To living by your values.

2013-11-22 12.09.08

To being the best YOU you can be!

Over the last few months I’ve made an effort to say YES to opportunities that have come my way. I’m being careful to try and keep pacing while I do this and I’m also giving myself permission to say YES to my health by saying NO to others when I need to.

By saying YES over the last few years I’ve taken up some exciting opportunities, including:

  • Creating the Foggy Frog and the Pain Gang picture book
  • Developing a 3-year Environmental Management Plan which will guide community sustainable actions within one of the Local Councils I work with
  • Developing educational biodiversity trails for local schools in another Local Council
  • Joining the executive committee for the South Australian Chapter of the Australian Association for Environmental Education through which I’m helping with organising and running a national conference later next year.

Without saying YES, I wouldn’t be doing any of these things but to be able to do them I also need to say YES to the following:

  • Pacing myself and resting every day
  • Eating as healthy as possible
  • Listening to my body

What do you say YES to?

Don’t forget that the Ultimate Spoonie Giveaway is now open. Sign up here for your opportunity to win! This giveaway has ended.