Monthly Archives: September 2013

Poor Rolo 🐶

Rolo has not been feeling too good this past week. His vet visit today showed he needed more steroids, and a blood test to check that the disease isn’t attacking an organ and the steroids aren’t causing him any problems either. All came back good, just a few markers that the steroids are having an effect on his liver, white cell count and causing a little anemia.

The bad news though was that the vet explained that his form of systemic arthritis can kill since it attacks organs 😒. So he’s being monitored closely and the steroid increased until they get control of the disease. He’s back on Friday to see how he’s getting on.

I’ve looked online too, and the prognosis isn’t great. His joints will become deformed and he’s likely to end up lame 👎. On the plus side though, in a young dog like Rolo they can perform joint replacements 👍. Plus he can start biologic or disease modifying drugs to control the disease, very much like humans 😃

It’s going to take time, but hopefully we’ll have a well Rolo ASAP. Or as well as possible anyway.

Send him your prayers and positive thoughts that they control this as quickly as possible please.

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30 things you didn’t know about me 👩

For the month of October I’m doing 30 things you didn’t know about me 😉. A fact a day. So watch this space…

I hope you enjoy reading them 👍. Feel free to comment and add your own personal facts too 😃

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Diet

I’ve decided to go dairy free as well as gluten free to see if it helps my liver symptoms, plus the added bonus of improving my autoimmune disease too 👍

There is a lot of research showing that diet effects autoimmune diseases, particularly gluten & dairy. So we’ll see if it helps 😉

I’ve started a page and blog at http://www.glutenanddairyfreekitchen.wordpress.com to share recipes I create 👍. I’m planning to bake some breads, cakes and cookies today, so lots of recipes will be coming to the blog later today… Then as soon as my supplies arrive I’ll be making gluten free cheeses and live yoghurts too 😋. Yum! Plus ice-creams, jams & chutneys and chocolates 😃. I can’t wait to get cooking and sharing with you all 😉

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Assessment time!

It’s Rolo’s assistance dog assessment on Tuesday! I’m so nervous!

It would be amazing if he passes, it really makes such a difference having him help me 👍. But even more, I find that having him with me brings me so much confidence. I’m never alone as I always have him by my side 😉. I’ve also found that he opens up barriers to being in a wheelchair. People find it difficult to talk to wheelchair users, but having Rolo is a superb ice-breaker, I’ve never chatted with so many people!

I just hope that his autoimmune disease doesn’t stop him working 👎. I’d be lost without him, and it’s a two year wait for another assistance dog. Fingers crossed his disease gets under control and he can work for a long, long time…

Wish us luck for Tuesday! I’ll let you know how we get on…

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That painful time of year 😒

The chilly weather is here, which for me means far more pain 😒. It’s so tempting to just stay inside with the heating turned right up to keep my joints warm, but where would the fun be in that?? I’d go totally stir crazy!

So instead I wrap my joints up in thermal support wraps and snuggle up in warm clothes and cozy furry boots for my poor ankles, and I LIVE! Yep, I probably look like I’ve been in some accident! My neck collar, wrist supports, elbow, knee and ankle supports, shoulder and back braces! But who carers?!?! It reduces my pain, that’s all that matters!

I don’t plan to sit here feeling sorry for myself. The negativity would totally zap my spirit! I plan on having some fun!

Now I just need a solution to getting out in the ice and snow… My wheels skid in my wheelchair and I slip like crazy if I use my crutches on those little trips 👎. Solutions most welcome!

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I’m more than my disease…

Far too often we get sucked into a cycle of being sick. We live, breathe, feel and think the disease! Which may sound perfectly normal, and it’s fine to do that right??

No, it’s not fine! It sucks the life out of you, leaves you concentrating on all this negativity and experiencing everything so intensely!

Cut yourself free! Dream of non-disease related things, enjoy a fun book, a good film. Go out for a walk, or wheel if you’re like me and in a wheelchair 😉. Enjoy the sunshine, sing along to an uplifting song, just DO something to come out of your pain and disease.

You are not your disease, you are much, much more than that 👍

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I promise that it works! Yes, you still feel sick, yes the fatigue still Zapata and the pain still stabs and throbs, but by doing positive non-sick things you forget about it all, and then realise you just had a great time!

There will be bad days when distraction just doesn’t work, but there will also be lots and lots of really great days where you forget about it all and just have a great time 👍

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Side Effects 👎

These steroids drive me crazy!!! Unfortunately without them I’m so sick, but the side effects of being on this high dose for a prolonged period are awful!

Steroid induced; osteoporosis, high BP, high Cholesterol, leaky intestine leading to liver damage and Cushing’s. Then yesterday the optician also found steroid induced; cataracts and high high pressure which causes glaucoma!!! What else???

And there is no end in sight to when I’ll reduce the dose!

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Hi to all the new peeps 👋

You’ve come at just the right time as I’m posting daily throughout October a little about myself so you can see the me behind Spoon Shortage 👍

I’m a Spoonie and love to share my tips and inspiration, plus my woes too about living a Spoonie life. A single mum from the UK with a rare systemic autoimmune disease – Adult a Onset Stills Disease. It has me in a wheelchair and feeling sick and spoonless 👎

But I’m a positive soul, and love to share how we live life successfully from a spoonies perspective.

Thanks for joining me here, and do come along to my facebook page too for awareness, support and giggles – http://www.facebook.com/SpoonShortage

October is looming, so you’ll be sick of the sight of me by the end of the month!

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Zapped & Sleep Issues 💤

I’m feeling totally spoonless this weekend 😒. I was supposed to be baking my gluten free goodies, but a severe lack of spoons has meant I’ve spent the day sleeping 💤. Let’s hope it helps and I’ll be more ‘with it’ tomorrow?!?!

On the positive side I’ve found something to help with my sleep, or rather lack of it… Nytol! I tried it last night when I woke wide awake at 1am and I was soon sleeping soundly and only woke again at 6am 👍. I’m planning to make this my regular routine, but perhaps I’ll just take one pill next time since I’m only taking them in the early hours?? I’ll test it out!

It was a huge relief to sleep, it’s no good at all for the fatigue when sleep fails me 👎. Fingers crossed I get the balance right and sleep well from now on 😉

Add that I now change my fentanyl in the evenings, so no vivid dreams, secure the patches with tape, so better pain relief, leaving my iPad in the lounge, so no distractions, reading when I wake to tire me out, my meditation music to soothe me and have my IV steroid on board, so less illness and until this weekend, more energy in the mornings which helps to wear me out for bedtime 👍

I hope with everything that now I also have the herbal sleep remedy that I have this cracked!

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Meds 💉

I tried delaying my steroid IV and felt absolutely dreadful and my next infusion appointment wasn’t until next Wednesday!!! But my nurse is amazing! When I phoned, she squeezed me in for a top up today. What a star ⭐

So thankfully I’ll be feeling much better in a few days 👍. I’m so grateful to my wonderful hospital and the nurses and Professor who look after me 😄. I feel so blessed to have such a great team.

Where would we be without our Meds??!! My biologic and steroid increase has me back living a little 👍. I’m so very grateful!

Add the fentanyl to reduce the pain and the Meds to control the steroid induced high BP, high cholesterol and osteoporosis and I can thankfully continue having the steroids 😉

I’d be so lost without them. The NHS is something I’m eternally grateful for 👍

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