Monday Magic – Inspiring Blogs for You

Monday Magic

Here we are a week into August – and it turns out that what my grandma used to say is true – time really does move faster the older you get!  Where has the year gone? In fact where have all the years gone?

 

 

 

 

I have just taken up the Chair of the alumni committee for my old school – whilst I’ve been on the committee for a few years the shoes I’m filling feel enormous as they were previously worn by my old chemistry teacher – one of my first official roles will be at the 30 year reunion for my own year group in September.  A couple of us are currently tracking down classmates – stalking people on Facebook, Linked In etc according to my kids – and it has unleashed so many memories.

Can it really be 30 years since we left school?  Some of this group know that I am now disabled, but it is going to be a really big deal attending this event in my wheelchair and answering the questions!  I think when I give a little speech at the beginning standing up, I might say that the wheels are to accommodate my high heels!

C and D

Who are those youngsters? Aged about 18 – Duncan in his Rick Astley days!!  

 

 

 

 

 

 

 

 

 

 

 

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The current 18 year old!

 

 

The funny thing is that despite all the physical changes in my body, the family I now have, the career I loved and lost, the exhaustion of life with chronic illness, inside I can still feel that 18 year old.  My own 18 year old just looks at me, shakes his head and tells me I am old – ha, ha, ha, none of us believe it will ever happen do we?

 

 

 

 

 

 

Playing 18

Mum and friends playing at 18 year olds!

So what better way to get over the feeling of being past it, than to find some inspiring blog posts to inject some zest today!  Kick off your shoes, grab a cuppa and settle down for some fantastic reads – I hope you enjoy this week’s gems as much as I have!

https://movementdisordersblog.wordpress.com/2017/07/31/skimming-through/

https://chronicyogiblog.wordpress.com/2017/07/31/what-if-it-stays-this-bad-chronic-illness-and-managing-the-what-ifs-spoonie-yoga-day-8/

https://brainlessblogger.net/2017/07/28/managing-work-with-chronic-pain/

https://wheelescapades.wordpress.com/2017/04/05/naidex-the-nec-birmingham/

http://jessicagimeno.com/how-chester-benningtons-music-helped-me-survive-depression-abuse-chronic-pain/

https://kellyontherun.com/2017/07/11/perception-icebergs/

http://www.goldengraine.com/2017/07/26/disabled-full-time-job/

http://www.chronicallypositivemom.com/the-last-lecture-inspiration-for-everyone/

http://www.themerrymomma.com/2017/08/3-ways-building-closer-family/

https://thoughtsinamoment.com/2017/08/03/biofeedback-therapy-with-mindful-nutrition-wellness/

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From Chronically Positive Mom blog

Remember to comment, like, share and make a blogger happy!

Claire x

 

 

To conclude her Book Blog Tour – Q&A with author Laura Trentham

Earlier this week I posted my review for new novel Leave the Night On and now to celebrate and conclude her blog tour, here is a fantastic Q&A with author Laura Trentham.

 

  1. What inspired the novel plot?

Plots are strange things for me…I can rarely pinpoint anything in particular that triggers an idea. They usually pop into my head when I doing something else entirely like making dinner of driving the kids around.

  1. What’s your favorite scene? Why?

I love the scene where Sutton gets drunk and finally propositions Wyatt for real. I hope it’s funny and sexy and the reader can feel her mortification when she thinks he turns her down.

  1. Who’s your favorite character? Why?

Wyatt. He’s sexy and tough, but also incredibly sweet. He loves his family and would do anything for them. My heroes are complex and most definitely not a-holes.

  1. Any other books in the pipeline?

Two more Cottonbloom books! WHEN THE STARS COME OUT (1/30/2018) features Wyatt’s twin brother Jackson. SET THE NIGHT ON FIRE (8/2018) is Mack Abbott’s book. Also, sometime in the fall of 2018, I’ll have a military themed romance/women’s fiction book releasing! I’m super excited about it too.

  1. What led you to write in this genre over others?

Actually, my first books were historical romances, and I’ll be re-releasing two and adding a new book in my historical Spies and Lovers series this fall (Sept/Nov 2017). But, while the historical books were on submission with publishers, my agent suggested I try a contemporary. It sold to St. Martin’s Press only a couple of months after my historicals sold. I’ve set all my contemporaries in the American south because that’s where I was born and have lived most of my life. I understand the way southerners talk and think.

  1. Do you have a favorite book and author?

I’m going to have to throw it back to Mary Stewart as my favorite author. I quite often reread her books. But as far as which book I’ve reread the most, it would have to be Julie Garwood’s The Bride.

  1. Why and how did you decide you wanted to write for a living?

I’ve always been an avid reader, but I didn’t even consider writing until five years ago. My daughter started preschool, and going back to work doing what I went to school for (chemical engineering) wasn’t feasible. I sat down one morning and started writing. At first, I didn’t even tell my husband what I was doing. I won’t lie, it took a lot of work and rewrites to get those first manuscripts good enough. But, eventually, I signed with an agent and sold them both.

  1. What’s your favorite way to relax?

Reading! (I know that’s a shocker:) I also enjoy the mindlessness of games on my phone.

  1. What’s your favorite food?

Fried rice! I just learned to make it at home. My rice cooker is my second favorite appliance (behind my coffee maker!)

  1. Sounds like Sutton’s fiancé’s a cheating…um…cheats.  Why did you decide to use that as an aspect of your story?

Andrew is a secondary character in the first Cottonbloom trilogy about the Fournette siblings. He’s kind of a slime ball in those books too.

  1. Tell us something about Wyatt that we don’t learn from the book.

He likes to wear women’s underwear. Just kidding!! Actually, I’m drawing a blank, he’s an open, honest kind of man.

  1. This book is set in Mississippi.  Does this location contribute to the story in some way?

It’s actually set half in Mississippi and half in Louisiana. I wanted a southern location. But, I also envisioned a twist on the wrong side of the tracks story. In Cottonbloom, the more affluent live on the Mississippi side and the blue-collar working class live on the Louisiana side. I wanted that push-pull and rivalry between the two. It informs the relationships between my couples.

Thanks Laura for a great new read!  I will be looking out for some of the other Cottonbloom books….quite fancy finding out what happens to those other Abbott boys!

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Chronic pain, opiates…& where does that leave me? (Part 2)

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!

 

#Book #Blog Tour – “Calling Major Tom”

This week author David M Barnett is on a blog tour to promote his wonderful book Calling Major Tom and he will be stopping by Pain Pals on Wednesday!

If you have read this heart warming story and have a question or a comment then drop by – or comment here right now!

Blog-tour

Book Blog Tour – “Calling Major Tom”

This week author David M Barnett is on a blog tour to promote his wonderful book Calling Major Tom and he will be stopping by Pain Pals on Wednesday for a Q&A post!

If you have read this heart warming story and have a question or a comment then drop by – or comment here right now!

Blog-tour

Book Review “The Girl at the End of the Road”

Disclaimer: I was fortunate to be given a copy of this book by The Book Club on Facebook in exchange for a fair and honest review.

The Girl at the End of the Road by K A Hitchins

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Vincent has found himself in a situation that any self-respecting “City” boy would balk at.  He has lost his job, his rented home, possibly his high maintenance girlfriend and perhaps most humiliating of all, he is on his way home to his parents’ house in Suffolk.  Rural Suffolk.  At this point in his life, a decade or so after leaving school, he did not expect to find himself becoming reacquainted with his childhood bedroom or learning how to live with his loving, but in his eyes, staid middle aged parents.

But he is clear in his own mind that this is just a temporary glitch.  The downturn in the economy and his huge personal debts will not hold him back.  However adjusting to life in the rural village of Elmsford proves hard for Vincent, who assumes himself to be a city hotshot.  There is no immediate access to internet, the job offers that he expected to flood in are nowhere in sight and his social life is virtually non-existent – unless you count dog walks with his parents’ elderly dog.  A trip to the local library brings him face to face with a memory from the past in the shape of librarian Sarah Penny.  Having run into this old school friend once, he finds himself encountering her on dog walks and then actively seeking her out.

So begins what initially seems to be the most unlikely of friendships.  Sarah is the antithesis of friends who have featured in Vincent’s life as she is serious, quiet, slightly dowdy and happy to be in Suffolk.  She is certainly unlike the city girls who dress and make up to the nines, expecting champagne fuelled dates and expensive accessories.  Sarah, in her almost simplistic view of the world, makes Vincent accept some unpleasant truths about himself and his attitudes to life.

The story could be very clichéd, and at first Vincent is a pretty unlikeable character.  But it was with real interest that I watched his character evolve from spoilt young man to something altogether different.  Maybe there is an element of fairy tale to this, but as Vincent grows so does Sarah and the reader begins to have a glimpse into a simple world of an exceptional young lady.  I don’t want to give any spoilers, but I believe that there is enough already written about Sarah’s autism not to be giving anything away.  I am not autistic so do not pretend to have any inside knowledge about this complex condition.  But I do belong to a community of chronic illness sufferers, some of whom are on the autistic spectrum and I have recently read articles by author Laura James, who has autism and my own condition, Ehlers Danlos Syndrome.  I feel that Sarah’s autism, which included her extraordinary intelligence, has been handled sensitively and with relevance to real life.  For instance, her coping mechanisms at dealing with life following her mother’s death and her growing relationship with Vincent.

This book made me think, made me sad and in parts made me laugh out loud.  Perhaps most importantly it made me examine my own attitudes to those we consider to be different to ourselves and also those closest to us.  In my disability chronic illness community we call ourselves “spoonies”, in the book Sarah and her friends call themselves “The Specials” – a fantastic name.  Of course there is a moral to the story for Vincent regarding what in life really makes you happy…..and sometimes you are unable to see it for trying too hard.

For me a great read, with a long review, but 5 stars all the way!