My Sunday Photo 20th October 2018

Kitty Friends

Friends at last!

I know it’s only been four weeks since I spammed you with Kitty love but look, I’m so thrilled. Finally, they are friends and curling up to sleep together. 

BFF

This week we have been letting Ash go outside for the first time. He hasn’t managed to stray from the garden and often comes back to the door just to make sure he’s still welcome and we haven’t banished him forever. Sabrina was a little upset at first, going out was her way to escape Ash. But since they have been outside together, even though they’ve gone their separate ways, it seems to have brought them closer. A friendship is being formed. Or maybe just a tolerance, there is still a bit of hissing from Sabrina. And Ash still likes to jump on her back and go for the jugular. 

I also bought Ash his first ever collar, it’s a lovely turquoise blue and I think it’s beautiful. Of course, Ash doesn’t agree and is trying hard to remove it. If he’s going outside, though, I need people to know he’s not a stray. Not that I’m letting him out of the garden any time soon!  

Autumn Trees

The cats may have been outside, but I haven’t. We’ve had some beautiful blue skies this week, but it’s been a lot colder! I took this photo the other morning because you can really see the change in the trees now. This is the closest I get to going out sometimes, but hey, it’s not so bad is it. I love the trees at the bottom of my garden. 

Photalife
Sunday Snap

10 Facts About My Condition

I have Stiff Person Syndrome, I am one in a million

Stiff Person Syndrome Awareness Ribbon

Today’s Blogtober prompt is 10 Fact About Yourself. I’m turning this around a little and using it as a little awareness for my condition. In just five days times it will be our Awareness Day for Stiff Person Syndrome so this is quite timely.

I have this stupid Stiff Person Syndrome which is a condition which does exactly what it says, it turns it’s victims stiff. But it’s an extremely rare condition, believed to be one in a million sufferers world wide, and each person has different symptoms and reacts to different treatments. No doctor really knows what to do. And whenever I end up in hospital and say I have Stiff Person Syndrome I just get blank looks like I’m making it up. 

Let’s get on with some facts about Stiff Person Syndrome….

  1. Stiff-Person syndrome is characterised by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.
  2. People with Stiff-Person syndrome can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.
  3. Stiff Person Syndrome is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia
  4. There are some rare forms of Stiff Person Syndrome that are due to Paraneoplastic Syndrome. The person has a cancer and might not know it yet. The immune system Ramps up to fight the cancer and goes haywire attacking other organ. In SPS case it’s the central nervous system: brain and spinal cord.
  5. Most, but not all, of patients with Stiff Person Syndrome have elevated GAD65 levels in the blood indicates that the body is creating an antibody that attacks GAD, impairing the body’s ability to make GABA.
  6. Some people with Stiff person syndrome have the glycine receptor anti-body which is generally an indication of the PERM type of the condition.
  7. Stiff Person Syndrome can cause swallowing problems to the point of medical crisis. The patient then develops severe anticipatory anxiety about swallowing and starts to avoid eating.
  8. Other disorders that can cause symptoms similar to Stiff Person Syndrome include hyperekplexia, multiple sclerosis, transverse myelitis, occult vascular malformations, neuromyotonia (Isaac’s syndrome), Schwartz-Jampel syndrome, muscular dystrophies, and metabolic myopathies.
  9. Stiff Person Syndrome was originally named Moersch-Woltman Syndrome after the doctors that discovered it.
  10. There are 5 types of Stiff Person Syndrome:

-classic stiff person syndrome
-focal stiff person syndrome
-jerking stiff person syndrome
-progressive encephalomyelitis with rigidity and myoclonus (PERM)
-paraneoplastic-related stiff person syndrome


Stiff Person Syndrome and Me

I first fell ill on 1st January 2016, but I realise now that I’d been showing symptoms for about a year previously. When I did get ill I was admitted to hospital unable to move. Intravenous steroids over a 5 day course got things working again and then I had physio to help me learn to walk before returning home 13 days later.

I was originally diagnosed with Transverse Myelitis after an MRI and lumbar puncture had ruled out MS. A year later, further testing of my muscles, nerves and blood showed that although I was GAD negative (see 5 above) I did have the Glycine Receptor anti body and was diagnosed with Stiff Person Syndrome plus PERM (6)

Next week I’ll be promoting the new Stiff Person Syndrome UK website and Youtube channel. I’ve been preparing lots of things to share on our Twitter account and I’ve made a video from clips of sufferers all over the world. The more people that know about our condition the easier it will be for future diagnosis and treatments to be made, so awareness is extremely important. 

Thank you for reading, and if you ever want to know more about Stiff Person Syndrome then please ask. 

A zebra with text "The zebra stripe ribbon for stiff person syndrome refers to training in medical school where they teach future doctors that "when you hear hoofbeats, think of horses not zebras!"
Please watch out for my zebra pictures on Twitter next week 
#Blogtober18

Word of the Week Has a New Home

Hello and welcome to the new home of Word of the Week, a nice and simple weekly linky, with everyone welcome to pop by and share. You reflect back on the past week and sum it up in one word. Then share your word with us in a blog post, with as little or as much explanation as you like. 

This linky has been hosted for a long time over on Jocelyn’s blog The Reading Residence, but now she has handed over the reigns to me. I hope all the regular linkers will come and join me now.

There are not too many rules with this linky, just remember to read at least another couple of posts in the link up after adding your link. Do try to stick to the theme of summing your week up. I will read and comment on all posts and tweet them out for you. Please add the badge below to  your post so that others may find us and join in. 

If you are unfamiliar with the Word of the Week linky then please feel free to ask any questions. New linkers are always welcome, we love to hear what you have been up to in the past week. 

My word of the week this week is;

The word manic in purple
Manic

It’s been pretty manic around here this week. I’ve had my day in hospital, we’ve been decorating (which didn’t go well and had to be redone) and we have a visitor from Germany staying over, a friend of my eldest daughter.

Then I’ve had to deal with repair men and utility suppliers as well as a ton of blog work to do. I’m also swamped in videos and information that I have to get ready for the Stiff Person Syndrome Awareness Day next week. At times I’ve felt quite overwhelmed.

I’m hoping for a nice peaceful weekend for some relaxing and reflecting.

Now, it’s over to you, come and tell us how your week has been.

WordoftheWeek

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24 Hours in Nowhere – Book review

book cover for 24 hours in Nowhere, a desert background with a silhouette of children in foreground
24 Hours in Nowhere by Dusti Bowling

The Blurb

When you come from Nowhere, can you ever really make it anywhere?

Welcome to Nowhere, Arizona, the least liveable town in the United States. For Gus, a bright 13-year-old with dreams of getting out and going to college, life there is made even worse by Bo Taylor, Nowhere’s biggest bully. When Bo tries to force Gus to eat a dangerously spiny cactus, Rossi Scott, one of the best racers in Nowhere, comes to his rescue – but in return she had to give Bo her prized dirt bike.

Determined to buy it back, Gus agree to go searching for gold in Dead Frenchman Mine, joined by an old friend, on of Bo’s cronies, and Rossi herself. As they race to find the treasure before the most important biking competition Nowhere has ever had, they bond over shared stories of how hard life in Nowhere is – and they realise this adventure just may be their way out. Author Dusti Bowling (Insignificant Events in the Life of  Cactus) returns to the desert to create a gripping story about friendship, hope, and finding the power we all have within ourselves.

My Review

This lovely story is aimed at young teens who can all relate to friendship troubles and bullies. I loved reviewing Dusti Bowlings last book, The Insignificant Event in the Life of a Cactus, so I was happy to be able to review this book. I think they are both suitable for my girls aged 11 and 13 years. Boo has already read The Insignificant Events in the Life of a Cactus and enjoyed it.

As with her previous book, Dusti has left her chapters short and easy to read. More complicated words are introduced in a dictionary form. For example;

Abyss: a deep or seemingly endless chasm

These are not really a learning aid, they are presented as part of the story and the main character’s personality.

The four children undertake a difficult and dangerous expedition into a cave which collapses. The journey of their hopes and dreams is just as difficult and it’s interesting as they work out the answers.

If your child would love to join Gus and the Gang on their adventure in Nowhere the book is now available on Amazon in hardback edition for £12.99

Disclosure: I was sent a copy of this book to review for free but all thoughts and opinions are my own. The Amazon link is an affiliate link which will not cost you anything to click but may earn me a few pennies, so thank you.

The Home Office

I used to have a corner of the living room as my home office. I had everything I needed, a desk, chair, pc and complete filing system including my luxury branded ringbinders.

Then I got sick and rarely used my work station so it was passed on to Star. She now has everything in her bedroom and my living room was reclaimed  became a dumping corner for toy boxes.

I’ve decided now that I’d like it back as a home office. It just felt different having a space to work in. I seemed to get so much more done, I was more productive without distractions. 

The Little Man’s bedroom should really be a home office, it has so many plug sockets and it’s just the perfect size. But I’d have to kick him out and he’s only eight so I don’t think I’d get away with that. Maybe in the future there will be a bedroom shuffle, because I’m sure if one of the other bedrooms became free there would be a rush to move around. The Little Man is happy in his little room for the time being though, so I will have to settle for my living room.

My Ideal Office.

I’m lucky enough to have quite a large living room so I can easily spare a corner. I do think my needs have changed since the last time though. For one, I’d need a very comfortable chair to sit in. I would be using my laptop so the desk would not have to house a pc. I’d like lots of storage for all my paperwork. 

But, it’s not just work, there is also play involved. I like to do a bit of papercraft, so it would be nice to have the desk to use for that. And I really love stationary and pretty things, so it would probably be less office like than before. 

And when I’m not working, I’d love to be able to store everything neatly away.

Inspiration

It will be after Christmas before I can set up my new office because that’s when we’ll be re-decorating. But I’ve been looking on Pinterest for some inspiration. I’m a long way from making up my mind though.

a simple white desk and matching chair against a grey painted wall with a wire bookcase
Maybe if we went for grey, but I’d need more storage
a dark wooden bench beneath a large bookshelf full of books and plants
A bit too cluttered, but I do love bookshelves
An old wooden desk with a a floral chair topped with a painting and a lamp and set against a handpainted mural on the wall
I love the wooden desk
two white cabinets with a plank of wood across the top to make a desk
Or maybe I should have something made to suit. This is a plank of wood over two filing cabinets.

Do you have a home office? 

A little Note About Positive Reviews on Raisie Bay

A little Note About Positive Reviews on Raisie Bay

Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I’ve also seen negative feedback with say things like, I had to return this item because the colour did not suit me…is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I’ve loved. If I don’t love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It’s always the latter.

This is my blog, my place and I’ll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.