A Plea To Be Treated Holistically

I’m struggling with a few things at the moment and don’t know how to sort it out.  I have a number of medical problems that are being treated individually, but they seem to contradict one another in terms of treatment and what I really need is for someone to sit down and look at the whole blimmin’ lot holistically rather than treating each thing in isolation.

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If you read my blog you’ll know that I’m waiting on the results of the MRI/CT scan I had a couple of weeks ago for a suspected dissection to the carotid or vertebral artery.  I have a hospital appointment on Friday but I anticipate that this will deal with the one issue only. I’m guessing we will have a chat about stroke risk and how I can mitigate it.   What about all this other stuff though?

You also know about my heart attack, caused by SCAD.  Since this happened I’m left with premature atrial contractions which are irregular heart beats.  I’m told this is not serious or life threatening in most cases but I am prescribed a beta blocker for it.

Now the trouble with beta blockers is that they slow you down.  Not a bad thing you may say.  However, combined with my next problem, an underactive thyroid, then that makes me doubly slow.  If I have a few days of action, then I may spend the next couple of days in bed, good for nothing.

Well can’t you take levothyroxine for your thyroid? Well yes, but guess what, if I take the recommended dose I get more palpitations and I twitch incessantly at night.

So, if beta blockers make you slow and PACS are not dangerous, why take the beta blocker? Good question – I asked my GP to refer me to a SCAD specialist, which he duly did last November – nothing has happened.

I’m also told I have high cholesterol.  Must be down to diet you say.  Have you seen how much porridge I eat? Did you know that an underactive thyroid can raise your cholesterol? Would taking the correct dose of thyroxine sort it out? Who knows as I can’t tolerate it.

Why not take a statin then?  Great idea.  But don’t statins make your arteries more flexible?  Isn’t the reason I had a SCAD the result of over flexible arteries in my heart? Oh yeah! Back to the drawing board on that one then.

As you can see, I don’t know what to do.  If I put it in the hands of the professionals, which one’s advice do I follow, because I can assure you they all want to treat me with something different.

They want to fix whatever I have presented with and of course that makes sense, but I, you see, want to be treated as a whole person.  Who will look at all this stuff and make some sort of judgement call?

Who knows.   I don’t.

 

 

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Getting Involved With The British Heart Foundation

In 2011, aged just 49, I had a heart attack.  It came out of the blue after a period of stress at home and at work.  It turns out I have a rare form of heart disease called spontaneous coronary artery dissection (SCAD).  Often not diagnosed until post mortem, this disease claims the lives of many otherwise healthy young women and men who have no obvious predisposition to heart disease.

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A SCAD is a tear in the coronary artery which creates a blockage to blood flow in the heart, resulting in angina, heart attack, or death.

SCAD has been likened to a lightening strike – it comes without warning and there is no way (yet) to predict or prevent it.

For six months after my heart attack, I had no idea it was attributed to SCAD. I  was bewildered and looking for answers.   It was during this time that I was most grateful to the British Heart Foundation for their support.

I was given leaflets at the hospital and one of the first things I did was ring the BHF helpline for advice and support.  They were great and so helpful in just making me feel more safe and secure.  I scoured all the leaflets they provided and took the advice on board.

I was pointed in the direction of my local heart support group and soon joined the committee, using my project management skills to help the group start up a gym.

I  joined in local fundraising efforts by collecting at supermarkets and in the city centre.  I also manned a BHF stand at our local Women’s Day to share the message that heart disease affects women as well as men.

I was even lucky enough to be invited to the BHF labs in Manchester to see first hand the research that takes place.

I am most grateful however for the funding that The BHF has provided into SCAD research.  The BHF is first and foremost a research charity and a SCAD patient group campaigned to get funding for research.

The research project has been running in Leicester for over a year now and I’ve been lucky to be chosen as one of the participants.  The research involves a review of family medical history, plus a number of tests. including an MRI, ultrasound and skin biopsy.

Although I was slightly nervous of what else the study might find (ignorance is bliss after all), the sensible part of me wanted to chat to an expert about the condition to better understand the risks.  I also wanted to know the risks facing my sister and nieces as research so far shows a genetic link.

The study day was in fact extremely helpful and considerably eased my anxiety once I was able to understand some of my ongoing symptoms such as an irregular heartbeat.

I’ve never taken part in a study before, but I’m so glad I did as we really need to understand why SCAD happens.

One of my greatest fears is that I will have another occurrence.  Many people have multiple SCADs and there is currently no known way to predict or prevent them.  As I write this blog post I’m waiting on results from an MRI and CT scan of my head as there is a chance that I may have experienced another dissection, but this time affecting arteries supplying  blood to my brain.  Wish me luck with this one!

SCAD now has its own charity in the UK, BeatSCAD which is now fundraising in its own right.

From wearing red in February, to baking scones, there are lots of ways to support the BHF and I hope I can continue to do so.

I’m hopeful for the future and maybe together we can find some answers!

<a href="http://candyflossdreams.net&quot; rel="nofollow" title="Candyfloss & Dreams"Dream and Sparkle Linky 

 

 

 

Just When I Thought It Was Safe To Go Back In The Water

I’ve been writing lately about how much better I’ve been feeling and how I could see light at the end of the tunnel; post menopause; SCAD five years behind me and all that.

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I hit 55 this week and celebrated with a fabulous luxury UK break.  Then, the day I get back from my holiday, I end up in A&E with a suspected TIA.

Pissed off doesn’t even begin to describe how I feel.  I have to go for a scan of my carotid this week at the TIA clinic. From there, a firmer diagnosis can be made, but I can’t help but think it’s all tied up with SCAD.

Unfortunately, stroke is a common feature in our family, and doesn’t come with a happy ending.

So banned from driving for four weeks and back to worrying about dropping dead or having a full on stroke.  Happy Days!

 

Walking: Bulkeley Hill Wood, Cheshire

I’m making more of a concerted effort to get into walking lately and luckily, have friends who live in Burwardsley, Cheshire and who know and love the surrounding area.

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A few days ago we set off from the Candle Factory in Burwardsley,  heading along a circulatory route which took in Bulkeley Hill Wood with its fabulous views across the Cheshire countryside.

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The route crosses farm land, as well as woodland, and is part of the Peckforton Hill range on the Sandstone trail.

It’s not too hilly, although there are one or two places where you need to keep your eyes on the ground because of tree roots.

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The woodland is absolutely stunning!

As you reach Burwardsley, there is this beautiful cottage garden which has immaculately manicured trees.  It did give me a bit of garden envy.

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We popped into Burwardsley Parish Church on the way back as the graveyard has lots of Steve’s family name ‘Dodd’ which was very common in the Cheshire farming community.

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Our final pitstop was the Candle Factory.  Great views and a nice cuppa.  What more could you want!

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beatSCAD: An Update Five Years Still Alive and Kicking!

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Hello fellow Scadsters!

A couple of weeks ago, Becks Breslin, a pioneer of the UK beatSCAD charity, asked me to provide an update on what life is like five years post SCAD.

The beatSCAD website has lots of useful information for those newly diagnosed with this scary and bewildering condition.  I really wish it had been around five years ago when every cough, sneeze, ache or pain threw me into panic mode thinking I would have another dissection.

Anyway, still alive and kicking, this is the update I provided for the website:

I’m now over five years post SCAD, just coming up to 55 and the happiest I have ever been in my life. So what’s changed?
    1. I got healthy through eating well and exercising moderately (gardening, yoga, walking, badminton)
    2. I chucked my stressful job and now write a 50 plus lifestyle blog over at https://flowerpowerlife.wordpress.com/
    3. I re-joined my choir (Chester Ladies) and will become chairman next month.  We are a registered charity and I will be doing lots of public speaking (as well as singing of course!).
    4. My strategy for the future is ‘always have the next holiday booked’ so you have to be there for it!
    5. I travel extensively, although on a budget.  The picture is of me on the Brooklyn Bridge during a recent girls only trip to NYC!
    6. I don’t have much cash any more, but I spend on experiences, not things, which are no longer important.
    7. I’ve embraced charity shops!
    8. I am no longer scared of lifts (the worst already happened and I survived)
    9. I no longer get panic attacks (ditto)
    10. I still get premature atrial contractions, days when I’m exhausted, and days when my heart seems to play up all day, but I have faith that it will pass, so I don’t dwell on it.  I take my medication and hope for the best.
So what does the future hold?  Well, I’m thinking I may reach menopause this year (it’s now seven months since my last period) with the hope that my PACS will go away, or at least improve.  I’m waiting for my referral to Dr Adlam to come through so that I can perhaps ditch some of this medication.  I want to travel more, blog more, experience more, do more and just have fun.  I’m saying ‘yes’ to everything I can!

 

 

Weight Watchers Four Week Total Loss 6.5 lb

This week I lost another one and a half pounds, so I’ve lost just shy of half a stone in time for my holiday to NYC which starts bright and early tomorrow morning.  This means I can fit into my evening trousers (yay!) and will feel more comfortable in my clothes while I’m away.  I thought it was going to be good news at the weigh in because I noticed that my normal jeans are embarrassingly baggy around the bum and will have to be consigned to the charity bin.  Now, I realise that this could be false optimism, as five days in NYC could land me right back where I started, but there will be lots of walking to mitigate the effects of cocktails, bagels and the odd Krispy Kreme.

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Weight Watchers: Week Four

I’m into my fourth week now with Weight Watchers and total lost is five pounds.  I’m making slow and steady progress and I’m still eating carbs and butter.  Don’t get me wrong, this is no picnic, as there has been no chocolate, cake or pudding in the house, but it doesn’t feel at all faddy and I’m coping well.

My staple dinner has been seabass or salmon with roast vegetables, which allows me to have carbs at breakfast and lunch without going over my limit.  I know I could lose more if I kicked the butter into touch, but I’m finding it hard to give up as I love it so much.

The other obvious swap would be to have tea and coffee without skimmed milk.  I drink lots of cuppas and could save loads of calories on this.  One step at a time though, maybe that’s a thought for next week.

Christine x