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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My Sunday Photo 14th October 2018

Never Doing That Again!

The Littlies 2010

I didn’t have a photo for this week. I really didn’t know what to post. Then I saw that today’s Blogtober18 post had the theme ‘Never Doing That Again.’ I tried to think of what I wouldn’t want to do again but, although there may have been a few things, I didn’t really think I had anything of interest to share. (Apart from eating Octopus, it made me sick and I could taste it for days!) 

Then I thought of things I’d never be be able to do again, and having any more kids is one of them. My kids are my life and I am so grateful that I have them, they are all my blessings. But I definitely won’t be doing it again. Baby days are over!

So, I’ve dug out this old photo of all three of them together while the little man was still a baby, Boo was 3 years old and Star was 5. This was snapped early one morning when the girls grabbed a book each so I gave the Little Man one too. Awww, I miss them being like this, but if I’m honest, I’m glad I won’t be doing it again. Although, to be fair, it’s not like I get much more peace or sleep, sigh.

Photalife
Sunday Snap

It’s a Week of New Things

a purple star with the word, new, in the middle

Last week my word of the week was School as we had found a new school for the Little Man. We went out on Saturday to buy his new uniform and although we got everything we need the day didn’t end well. More about that in a little while. First I want to tell you that the Little Man absolutely loves his new school. He’s made lots of friends already and thinks his teacher is great. In one week I’ve found him keen to read his book just so I can give him his comment in his reading log (he’s never been keen before) and he’s been singing songs to me that he’s learnt. 

He is happy and excited to go to school in the morning and comes home bubbling. I have missed him like crazy but it was certainly the right decision to send him back to school, he is so much brighter.

The Crash

We also have a brand new, I mean, so new it’s only just over a month old, car! It’s a top of the range Mazda with leather seats and so many features, including many safety features. Graham is in love already. BUT, it’s not ours really, it’s a courtesy car while our poor Skoda, Bernard, is being repaired. 

After uniform shopping on Saturday we were involved in a car accident. While waiting to turn right another car ploughed into the back of us at speed. Thankfully the girls were safe at home with their big sister so there were only three of us in the car.

Graham was fine at the time but has since become stiff and sore from whiplash and is suffering from recurring headaches. The Little Man was hysterical, but it was more fright than anything. He hit is head off my seat, despite being strapped in. He has bruising on both his legs and also has a stiff neck and shoulders. 

I don’t even remember what happened but I remembered seeing blood from my foot and my shoe was missing. My back was really hurting and I’d gone stiff in spasm from my condition. I can only surmise that the shock of the accident caused my startle reflex to set in and I somehow managed to get pretty bashed. I was taken to Accident and Emergency by ambulance, but my experience at the hospital was not good. The Dr had no idea how to treat me because my stiffness meant he couldn’t make his usual examinations, after poking my back and sending me into a massive spasm again. It’s difficult to examine someone for spinal injuries when they already have a knackered spine. I can’t blame him for not knowing what to do, nobody ever knows how to deal with me.

I left hospital unable to weight bear on my left side and my back has been hurting like crazy. But, it is slowly getting better so I just need to heal. If it was getting worse I would be worried. About three days after the accident I also suffered from the stiff neck and shoulder pain. My ankle is also swollen, bruised and grazed. But the main thing is, we survived. 

New Plan of Treatment

On Tuesday I was back at the hospital but this time for a scheduled appointment with my consultant. We first discussed the IVIG which I am feeling benefits from now that I’ve been having it for a year. Changing it to every month, rather than every three months, has made a big difference. 

Then we discussed all the new issues I’d been having and he told me that they are all side affects from my medication. I’ve been taking this medication for three years now without side affects, but now that the IVIG is in my system there seems to be a battle going on with the IVIG and my medication. So, the plan is to reduce the medication and adjust the IVIG so that I get the best benefits without the side affects. 

It sounds good to me. I’m quite happy to be pumping less drugs into my body, especially if it gets rid of the side effects.

Other issues I’ve been having can be put down to me lacking in B12 and folate. My medication can stop my body from absorbing these from my food so now I am taking supplements for four months to help. 

I am actually beginning to feel more positive. I know there are other drugs that can be used to help my condition, but as it’s so rare it’s hit and miss as to whether they work. So although, although I’d give anything to take something to make me better, the thought of taking even more drugs was making me feel anxious. I’m so hoping this works out, my consultant seems quite confident it will. 

The Reading Residence Debs Random Writings

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.