Au Revoir

I havent written anything in this blog for ages. It hasn’t been because I haven’t thought about writing posts, I have. It just seems to evade me to actually write them down.

I was wondering about this and asking myself, why haven’t I been able to tell you about some of my latest health issues. Like the fact that I had some bloods done lately that found an auto antibody called PMscl which basically means  I now seem to have an overlap disease, schelraderma. And this (and I need to confirm this once I have my next consultancy appointment) means I have a rare form of dermatomyositis called schleradermatomyositis (say that while eating an apple!). It’s so rare there isn’t even an article about it in Wikipedia.

So why haven’t I written more blog posts of late?

I think it is because I am starting to feel better (with, or without, the schleraderma).

I am back at work full time (although often that really takes it out of me and I get exhausted).

I feel a lot stronger in myself.

I am managing to do  4 minutes on the cross trainer, twice, most days.

I can walk much further.

I am even going to my first business meeting next week: It’s been at least 10 months since I was able to, not only travel to a meeting, but actually have the strength and stamina to sit though one. It’s in london at Imperial College and its also signficant as it’s the end of a 2 year project I’ve been involved in that I’ve somehow managed, through the illness, to stay afloat with.

Myself and Suz started this blog to help us cope with a shocking and difficult reality, of being very sick. This blog and the people who read it and had conversations with me about the trials and tribulations I wrote about, has helped me to get through what has been, probably, the most difficult year of my life, both emotionally and physically.

I know I’m not completely better and it’s an incurable disease anyway, so will rear its very ugly head from time to time, but for now, I am moving forward. Dermatomyostis may be clinging onto my shirt tails and causing some drag, but I’ll wear some skates and pull it along with me, I will no longer let it control me, I want to live.

So my blogosphere friends, I say, for now, au revoir and thank you for being there with me: I wish you all, health, love, happiness and peace.

Sus xxx

New Beginnings

2013 is the year for new beginnings.  It is the year for fresh challenges, new energies and a future that is about looking forward to better things.  Notwithstanding how tough 2012 was, I guess I feel like I have learnt a lot – about myself as much as anything else.  And in that respect I feel grateful and indeed proud to know that even as I get older there is more to learn.  After all, life is a journey and it would be terribly boring if the landscape was dull and the road predictable. When things are  easy the temptation is always to be  complacent and expectant – that things will just be OK.  And in the end OK is enough –  by default it is the standard.    In my view OK is simply not good enough  – and for that I am grateful that my life has been nothing short of extraordinary – tough lots of times but worth it all the same.

So in  writing this note I want to reflect on what I have learnt in what is easily the toughest year of my life.

The trials and tribulations of 2012 have taught me:

• Never doubt your own strength. You will be as strong as you need to be  – strength draws its reserves from unknown places.
• We will get through even the darkest moments and at some time, when we are ready, we are amazed and proud of our resilience.
• Resilience is what we admire in other people even though we take it for granted in ourself.  It is by far one of the most under-rated capabilities we have. We need to recognise it as a gift and draw on it when nothing else is left.
• Family and friends are forever. They are everything.
• People who are false, eventually just disappear out of your life – they can’t match your honestly.
• Our mind is a  wonderful and powerful thing.  I choose to see the glass half full. I choose to be well and positive. I choose to make my own future.  I choose my destiny and am not defined by my failures.
• I can let go –  lose nothing and gain strength.
• Some people will always be victims and I am not one of them.
• When your hair falls out so does some of your confidence.  When it grows back, it takes much longer for the confidence to reemerge.
• Some doctors you trust with your life  – others you leave for others to trust.
• The world goes on even when I don’t work at a million miles and hour.
• Everything I experience is in the perspective of my life’s journey.  It is a mosaic of my complexities, of light and shade, of colors and riches, of cracks and chips – but it is what it is and it is worth the effort of holding it together.

There you have somethings that I got out of last year.  On the practical side – nausea passes, hair grows back, your appetite returns, your mouth eventually stops hurting,the flavour of food returns, life goes on – and on.

So now the final update

• Katherine got through year 12 with an excellent score and is off to Sydney University in a couple of weeks to study Diagnostic Radiography. I will be on my own at home and that is a challenge I am surprisingly happy to face at the moment.
• My cancer has gone into remission  – for how long is any one’s guess but the hope is it is for a few years – maybe forever, but Im not really thinking about that
• I am working again.  I have set up another business but am also contemplating full time employment – maybe even a sea change.  I am open to all possibilities this year
• I have written down a secret list of what I want to get out of this year – I would share it with you all but then it wouldn’t be a secret and I have learned that sometimes you just have to wait and see.

So life is busy and full again – but not too full for me to reflect on how important it is to make time for yourself and to never take things for granted.

Writing this blog with Sus has been a lifeline – it was just the writing that mattered. Not that anyone was listening.  It is amazing just how therapeutic it is just to hear yourself articulate your thoughts – in words and in print.  never under estimate the power of conversation.  And that is where it all started – the desire to start a conversation.  And for now there is not much else to say  – except thank you, from the bottom of my heart, to everyone that joined in.

All my love and I wish you all a happy and fulfilling life.  I know that mine is.

Suz xxxxxxxx

Will I ever get my old leg back?

If you have been reading this blog, you’ll know I’ve got a bit of a gammy leg.

My neurologist said he didn’t know about legs so I needed to see  a rheumatologist – so my GP had to set up an appointment and it took a few weeks (the wonders of the NHS). Yesterday I saw a rhuematologist at the ‘Freemans hospital’ in Newcasle upon Tyne.

In case you don’t know, my gammy leg swells up both in the front and the back of the knee and into the thigh. The back is most likely a Bakers Cyst. But the front, the doctor isn’t sure if it’s an independent problem, or connected to the cyst. The Bakers cyst isn’t that big a deal, to be honest, it’s stiff more than sore, but the front swelling, well that’s another thing altogether and affects my muscle above the knee right up the length of the thigh and that really hurts! All I’ll say is that analgesics don’t even touch it, but heat packs are great, they sooth it, thank god for heat packs.

The rheumatologist did an examination of my legs and came to the conclusion that something wasn’t right with my knee, but that she had never seen this in dermatomyositis before – she’s one of the north of England specialists in the disease, so I take her word for it. So, she offered me an MRI, or treatment and then an MRI if treatment didn’t work. I took the latter as I really wanted/hoped for relief. The ‘treatment’ involved inserting a rather large needle into my knee and injecting steroids in. It wasn’t too bad because my knee was anaesthetised (bit like getting a filing at the dentist).

I came home and within hours my knee had swollen up and the bakers cyst appeared (it sort of ‘pops’ out) and my leg was extremely painful. I had to resort to the heat packs again. I called the doctor and she said it was most likely a reaction to the steroids and it would settle down, which Im pleased to say, it has.

SO, the point of his post is really just to give you an update on the whole gammy leg episode and where I am at with it. To tell the truth, the whole thing depresses me, it stops me from building up my strength – if I do anything much, I end up with a very painful leg that I have to keep off for days. Dermatomyositis is an insidious disease that relentlessly attacks not just your muscles but your very being. I’ve not given up though, Im still fighting it and I’m determined to win. Fingers crossed this treatment works, then its onwards and upwards, no more gammy leg tales…

Oh and before I go, for your delight, here’s another ‘leg’ I found in the field next to our house (not sure who had been chomping on it):

Susan Susan, Quite Contrary, How Does Your Garden Grow?

Well it doesn’t at the minute, at least the vegetable patch that I used to love to tend doesn’t.

The pictures above were taken about 3 years ago  – a good harvest that year.

Around this time of the year (in the northern hemisphere anyway) thoughts wander to little green heads, poking out of their soil beds, preparing to become delicious vegetables to adorn my plate in a few months time.

Last year at this time, unlike my normal routine, I did not plant any tomatoes, or prepare for various other germinations to happen. I had a feeling things weren’t right. At that time I only really had a rash, but I did keep getting various infections, stomach, respiratory and urinary tract. Might be a coincidence and not be connected to the autoimmune condition, but I had a series of them and felt very unwell, on and off for months. If I hadn’t been suffering from them, I may have started to plant out my vegetable patch and by the time it was nearing harvest time, I’d have been unable to tend to my babies, or bring them in. By that time, I had serious muscle involvement with my dermatomyositis and could hardly walk, let alone did the earth. So the feeling I had to not plant out that year was very prophetic.

But this brings me to this year, 2013. I really want to get my vegetable patch going again. It’s good the ground has had a year break, but I so miss growing stuff.

It took me 7 years to learn how to grow vegetables and fruit. In those years I learnt when to best plant the seed, how to look after it and tend to its needs. Growing vegetables is a little like rearing children. They need love and care, you can’t neglect them at all.

One of the things I struggled with early on was attack of the butterflies. I learnt quite quickly that unless you net your Brassica, you may as well forget about having cauliflower cheese. But when I did learn to net them, it felt so mean to stop the lovely butterflies getting their lunch, that in the end I always left a few, un-netted ‘sacrificial’ Brassica’s for them – they made short shrift of them, laying their eggs all over them and the caterpillars scoffing the Brassica’s and growing fat.

This year, I don’t think I will be able to extend myself to Brassica, but I am planning on germinating some tomato seeds soon – around mid February is when I start the germination process and it’s usually been successful.

I’ll also put some cucumber seeds in too, I like the small yellow varieties, like this heirloom cucumber.

And I will put a few potatoes in (or tatties as we call them up north). I like the yellow flesh ones like Charlotte. I might put a couple of courgettes in too  (Zucchini) they are easy to grow.

And finally a few lettuce, so we can have lettuce, cucumber and tomato sandwiches.

So, dermatomysotistis, you may have cheated us out of our vegetables last year, but this year I will be eating freshly dug potatoes and having delicious salads.

Our Nominations for the Liebster award

The Liebster Award

As part of the Liebster Award, nominees are required to make nominations for the blogs they feel should be recognized. There are so many great blogs to choose from so……where do I begin? There are some bloggers that work diligently to make people think and reflect; I believe that is what bloggers are supposed to do. First, a little information about the award and some formalities.

About the Liebster Award

“The Liebster Award is given to up and coming bloggers who have less than 200 followers.  The word ” Liebster” comes from German and can mean the sweetest, kindest, nicest, dearest, most beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome.”

Rules

• Thank the person who nominated you.  Thank you   Artofstumbling
  
• When you receive the award, you post 11 random facts about yourself and answer the 11 questions asked by the person who nominated you.
• Pass the award onto 11 other blogs (while making sure you notify the blogger that you nominated them!)
• You write up 11 NEW questions directed towards YOUR nominees.
• You are not allowed to nominate the blog who nominated your own blog!

The following is a combined response from Suz and Sus:

Eleven random facts about us.

1. I used to hate my curly hair but now I quite like it / I am a science addict
2. I am a workaholic and ashamed of it / I was an amateur astronomer as a child and wanted to be taken away by aliens
3. I used to be a competitive athlete when I was in my late teens / I am a pantheist
4. I had a dog once that I called after a Charles Dickens character: Mr Micawber / I am an advocate of animal rights and believe all things in the universe are equal (ALL things)
5. I have never had a broken bone – although have had some cracked ribs as a result of a bike accident / I was a vegetarian for 30 years until I got dermatomyositis and now I eat fish for the protein but im going back to being a vegetarian as soon as im well again as I HATE eating animals – it feels wrong
6. I feel that I am getting old and I don’t like it
7. I went to a catholic secondary college when I was a kid
8. I am just about the only one of my school friends that has moved away from the state I was born in
9. I feel frustrated with my own abilities  – enough is never good enough
10. I am a half glass full person – most of the time
11. I love burning candles around my house

Our answers to the questions posed to us 

1. What’s your favourite book?

• JD Salinger. Catcher in the Rye
•  Hitchhikers Guide to the Galaxy

2. Your favourite film?

• The Best Exotic Marigold Hotel
• Contact

3. Do you have any nicknames?

• Suzzie
• Boob

4. Do you play any musical instruments?

• No – but I did start to learn the piano once in my 20s
• No – Ive tried many and failed dismally

5. Have you ever had surgery?

• Yes – had some cancerous stuff extracted
• Yes – an arthoscopy on my knee

6. What’s your favourite food?

•  Smoked Salmon  – with capers on fresh bread and with cream cheese !!!!!!
• I don’t have one

7. What are you afraid of?

• Heights, snakes, sharks – anything scary
• Spiders and foolish humans

8. What’s your proudest moment?

• Giving birth to my daughter – no question about it

9. Your favourite item of clothing?

• A beautiful cream dress that makes me feel like Audrey Hepburn

10. Your favourite song?

• Moon River

11. Favorite TV Show?

• Spooks

Our Nominations:

http://jillinoisrn.com

http://highinbrixham.wordpress.com

http://franksdermatomyositisjournal.blogspot.co.uk/

http://superherounderpants.com/

http://nikilee766.wordpress.com/

http://rescuerover.wordpress.com/

http://myitchybubble.wordpress.com/

Our Questions

1. What was the name of your first pet?
2. What was the first album/CD you ever purchased?
3. Would you rather eat out or have a home cooked meal at home?
4. What’s your favorite flower?
5. What house chore do you absolutely loathe doing?
6. What is your favorite country to visit?
7. What flavor ice-cream do you like the most?
8. What is your idea of being decadent?
9. Who is the person you admire most in your life?
10. If you could choose a different job or career what would it be?
11. What style of music do you like the most??

Full Stop. New Paragraph

Well today is the first day of 2013.  Another year has come and gone  – one with lots of challenges, a few tears, lost hopes and a few more endings.

I have decided to welcome the new year simply.  Reflecting on 2012 I have been very tempted to write it off as one to forget.  But when thinking about writing this blog – a few days ago – I concluded that rather than wipe the slate clean I would simply get it into perspective.   It is tough love sometimes and I guess I would put 2012 into that category.  It wasn’t just the cancer but a range of other very difficult personal and professional challenges that together made 2012 a year I was keen to draw to a close.   However, having always subscribed to the view that whatever comes our way is what makes us the people we are, I am resolved to reflect on 2012 as one of those years that in the journey of one’s life, was simply an energy sapping detour. So to 2012 I punctuate with a decisive full stop and poise the pen for the next paragraph of 2013.

Experience has taught me that luck and opportunity are things we make for ourselves.  While I am still grappling with a fussy brain,  poor memory and no hair I feel as determined as ever to make my own luck and opportunities count this year.   I remain positive that this next phase will be a good one – as I am sure many others in the world do.

 

 

A Year Out of Perspective

Well it has been a bit of an odd year. A year out of perspective, one that really, I’d rather hadn’t happened.  But it has and I need to get on with my life and move into the New Year and take advantage of the freshness of that change.

I was talking to a friend this weekend and she said to me, “but Susie, when people have life changing events happen to them, like being told they’ve got an awful illness, they change their perspective on life and start to make changes, do things they’ve always wanted to, you need to do that too”.

I just didn’t know what to say, other than, I just want normal back. Yes, I did go through a period where I had an almost religious reaction to my diagnosis and felt I should do something ‘worthwhile’, but I quickly moved into the next phases of denial and depression. Maybe that’s a failing in me, but I can’t force myself. Yes of course I’d love to travel and achieve some professional goals and loose weight and spend more time with friends and all the usual stuff you want to do in a new year. But, what I really want, is normality, to be able to go for a proper long walk without fear of hurting myself so badly, that I’ll be unable to walk for a week, to not feel dreadful all the time and tired and sore. If I can achieve this in 2013 I’d be very happy with that.

To all the blog readers, sick and well, hope your 2013 is everything you want and hope for.

Susie x

Rudolph comes but once a year (thank God)

I’m not going to write a post about being ill or my bad leg today. No, this post is about my new Rudolph jumper and some memories it has invoked.

My brother, Andrew, whom I love and adore and with whom I shared a difficult and mad 70s childhood, is one of the worlds worst buyers of presents, ever. Some of his presents should go down in history for their tackiness, the teddy bear on a  bike is one that springs to mind (I ended up giving it to the scouts for their jumble sale – isn’t that awful). But I have begged my brother to either let his wife, Bev, buy the presents (she is very good) or give the money to a charity on my behalf, or better still, don’t buy me any presents at all, I really am happy to just see him at Christmas, that is present enough for me (at this suggestion, he said I was being selfish, not allowing him to give me a ‘proper present’).

For several years this worked and Bev bought the presents and all was well. Then this year I woke up on Christmas morning to one of the worst presents anyone could have possibly bought me…a Rudolph jumper….ARGGGGGGGG

Now I know they are ‘in fashion’ but really, I don’t care about that, I actually screamed when I opened the package, then sat, face aghast for several seconds while it sank in, then realised, “Oh God, Andrew has bought the presents this year”.

Now me and my brother have a very close relationship, born out of particularly horrible shared experiences of Christmas. Let me give you an example. We were brought up in a very poor household, by quite old parents. Our mam and dad had a full set of grown up children by the time me and my brother were born and so by the time we were around and wondering if Santa was on his sleigh, they literally couldn’t be bothered. Coupled with that, they were of a generation that had lived through rationing and World War 2, so gift giving was not at the top of their agenda.

One year, our mother actually told little Andrew and Susan that they had a choice this Christmas, “food or presents, which will it be?”. Being sensible children and knowing our mother didn’t have that good a sense of humour, we chose the food –  however, it still turned out to be egg and chips for Christmas lunch that year.

So out of this close relationship I am able to be quite frank and honest with my bother, so I called him up after the shock of Rudolph had worn off and I just had to tell him it was possibly the worst present he’d ever bought me and that is saying something. He got quite upset at this and I did feel a bit guilty, but I held my ground, otherwise god knows what might turn up next year. I said that under no circumstances would I be wearing it when I came round to his for Christmas dinner today and in fact I would only wear it under several other layers of clothes, to keep warm. He continued to be upset and I did feel pangs of guilt about being so honest about Rudolph and his merry nose.

That morning I continued to hum and har over that bloody jumper and as I got ready to go to my brothers for Christmas lunch the guilt took over and before I knew it, I was wearing the jumper and you know what…I think it actually quite suits me.

When I walked into my brothers house, he saw me wearing the jumper and clapped his hands with glee, his big ugly face lighting up, how I love him: My brother is one of the best things about my life.

Oh and you can see in the picture of me and Rudolph above, my moon face from the prednisolone has come down a bit, but its still quite puffy.

Andrew with Bev and Daughter Abbie

Happy Christmas or whatever it is you celebrate !!!

 

 

 

 

 

To all our family, friends and readers

I hope you have the most wonderful of celebrations – whatever it is that you celebrate at this time of year.  No matter what has gone before, Christmas holds the magnificent opportunity for peace and love.  Since I can remember it has been a special time in the life of my family.  I hope ti is for yours as well.

Merry Christmas and thank you for all your wonderful support.

Love Suz x

A holiday before the holidays

I’ve just had a little holiday break after my treatment.  You don’t realize how fantastic a holiday is and how much you need it until you take it !!! Even though the last few months have not involved much hard work, the ability to just get away and change the routine is itself refreshingly therapeutic.  While of course not much happens when you are  unwell, I never felt quite comfortable  doing nothing – not being pre-occupied with something ‘meaningful’.  For some reason being on holiday gives you permission to escape from all the things you usually worry about.  If nothing else – this is why holidays are a MUST !!!!  Let’s face it, the worries will be waiting when you get back (as I have found out all too quickly).  We really need to stop being so hard on ourselves.

Anyway my list of the ten best things about holidays:

1. Eating fresh fish and chips
2. Being anonymous
3. You can’t get an internet connection
4. It doesn’t matter what the weather is – you can relax whatever happens
5. Reading the papers – from front to back over more than one day
6. Going out for breakfast
7. Walking along the beach
8. Slowing down – literally !!!!
9. Going to bed late
10. 10. Not having to clean the house

By the way – am still bald !!!!!