Report From Prof. Aziz

I received a full report of my visit to Prof. Aziz on the Monday after meeting him that Saturday. It arrived very fast and it covered everything and a few things I had left out in my last blog post about the trip, so I said I’d go through it now.

In the report he outlines everything he went through during the visit.
He goes through my Diagnosis, My investigations to date, Current Symptoms, Medications and then he goes on to outline the visit in detail. Listing everything we had gone through and explaning the examinations he had done.

The main bulk of the new information about my abdominal pain is as follows, from the report itself:

On examination in addition to features of joint hypermobility she had severe allodynia which extended all the way around from the right side of her abdomen to the back, there was superficial tenderness over her abdomen, she also had severe tenderness on the left side of her abdomen, although less so than on the right side. She had evidence of angular stomatitis.

I feel that at least part of her abdominal pain is related to the anterior abdominal wall and she has a number of tender trigger points and there may be an element of anterior cutaneous nerve entrapment syndrome. The possibility of spinal nerve root compression causing pain, particularly all the way from the right side of the back to the abdomen also needs to be considered.

She has features of small intestinal bacterial overgrowth and likely has vitamin and mineral deficiencies. We also discussed the side effects of the drugs that she is currently taking, particularly opioids etc which will significantly affect her gastrointestinal function.

I have added links to explain all the new terms in there so be sure to click in and read those, I know I had to look them up!

His recommendations then are as follows:

  1. Slowly reduce Opioids as they are slowing gut function. Stop, Reduce and increase some medications as explained during the appointment.
  2. For small intestinal bacterial overgrowth I have suggested a prescribed antibiotic twice a day for 2 weeks following which she should take a probiotic.

  3. I would suggest that she sees a senior pain management specialist locally to consider splanchnic nerve blocks but it may also be helpful for her to have a spinal MRI of the thoraco-lumbar spine to make sure that there is no nerve root pressure.

  4. I have given her detailed dietary advice and have generally suggested a diet low in sugar and grains but high in white meat, vegetables and healthy fat such as olive oil. Overall I have also suggested that she should reduce the histamine content of the foods that she eats and have suggested some resources that she can look at. I have also suggested vitamins and minerals such as vitamin C, B complex, omega 3 and chelated magnesium.

That outlines the most of it, the next thing now is to make sure my doctors here get a copy of the report so that I can get the nerve blocks and other bits and pieces sorted out so I can properly start this diet.

I have started the food related side of the diet already and find it good, I just have to sort out the probiotic, vitamins and minerals now to go along with it.

My GP got a copy of the report this morning and my next appointment is for my Pain Specialist next Friday and I will fill him in on what needs to be organised regarding the nerve blocks and the MRI.

Thats it for now, I just wanted to fill you all in on what the report said. Thanks for reading this humble little blog and if you are out there reading, leave a comment to say hi! 🙂

Lette (Fainting Goat!) xxx

London Update Soon!

Just back from London after meeting with Prof. Qasim Aziz Neurogastroenterologist who specialises in EDS. It went super well and I am delighted with what he had to say to me but I am feeling so very ill after traveling (I know it was only one night but I’m not able!) I will get to the full update shortly.
Just wanted to let you know it’s on it’s way I just need a little rest for a few days, Ill get to it! 🙂

Cheers Folks,

Lette (Fainting Goat!)

Saturday Submissions – With Corina Duyn

My name is Corina Duyn and I am an artist and writer who lives with the chronic illness M.E. (and fibromyalgia, and a host of other issues – all resulting from M.E.

Anyway, throughout the now 18 years I have found a few ways to help me live a good life. Silence. Nature. A positive outlook and creativity.

I pretty much look at how my day is right now and not fret too much about what might happen tomorrow. Good or bad.

Initially I thought that I had become ill because of my creative life. Working too hard, so I tried my best never to be creative again. But a friend pointed out a few years in, that I was making drawings about not wanting to be creative. Case closed as the saying goes.

I embraced my creativity from that point onwards and it has given me a huge amount of knowledge and understanding of how I can deal with the challenges ME had bestowed on me. How to deal with pain, with exhaustion, with an at times non-working-brain. I learned that I could be Free on paper. I could fly by using clay. I could explore unknown worlds through writing.

birth-dance.jpg

Birth Dance, sculpture by Corina Duyn 2016

And the bonus is that it enabled me to connect with the world beyond my walls. A huge world of people who are interested in my words, in my creations. It enabled me to publish books, have exhibitions, but most of all to share the little bit of nuggets of healing I have found along the way.

Sharing my life’s experiences is the most wonderful side effect from living with chronic illness.

brave-into

page from my Into the Light book .

It is a peculiar world.

From the 1st January I am writing a daily blog. With anything and everything that plays around in my head. From life in my garden, dealing with intense pain, to creative adventures, to inspiration I take from others. A mixed bag. Just like real life.

My blog is http://corinaduyn.blogspot.ie (you can sign up for notifications) or follow me on Facebook https://www.facebook.com/CorinaDuyn/ , where I link these posts.

My website http://www.corinaduyn.com/ has a host of galleries of my artwork, in which you can see the different stages I went through from illness to wellness. (Not recovery- but wellness). Also some videos and documentaries which were made along the way.

Thanks for your company here!

Corina Duyn

_________________________________________

Thanks so much to Corina for sharing her blog and work with us, Isnt her sculpture and artwork beautiful? Be sure to hit up Corina’s Links and make a connection and if you want to take part in Saturday Submissions just see below, I am always looking for guest bloggers and I will link your blog or preferred social media link in the permanent blogroll if you are featured.

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any word count) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

Saturday Submissions – With Denis Murphy – Parkinson’s Disease and Self Expression

Parkinson’s Disease and Self Expression.

Hi, my name is Denis Murphy and I’m from Cork city. I am currently living in a little village in county Sligo.
A major turning point in my life came in 2007 when, at the age of 48,
I was diagnosed with early stages of Parkinson’s Disease.

I would like to share some of my thoughts, feelings and emotions with you as I believe by sharing, we can better understand what we are going through,
which often seems like a lonely struggle.
It can also bring a better understanding to our family, friends and loved ones.

We can get caught up in our own worries and forget that our disease or condition not
only affects our own lives but those around us and they often feel as frustrated and
confused as we do.
I am very lucky to have such an understanding wife.
She has had M.S for over thirty years so she has great patience,
empathy and understanding through her own experiences.

As anyone who suffers from Parkinson’s Disease,or has a family member who does,
will know and understand that it brings about drastic changes, both physically and mentally.
It can be very difficult for people with Parkinson’s to
express their emotions, feelings and
to cope with their loss of power and independence.

One of the many physical conditions is called “The MASK “.
This is when the face muscles become stiff and rigid and expressionless.
The eyes appear to lose their sparkle and the mouth seems to be
permanently in a “sad” position. To the outside world this appears as if the person with Parkinson’s Disease
( or PWPD for short) is uninterested, bored and
apathetic. But behind this stern facade lies a sea of feelings and emotions.

Another symptom of Parkinson’s is a problem with vocal expression.
The voice becomes weak and we lose our strength and with
this we begin to lose confidence in ourselves.
We find it more difficult to express our opinions
and ideas in public as we struggle to be heard.
So between difficulties with facial and vocal expression
we can withdraw into ourselves and stifle our emotions.
All the more need for an outlet to express these
emotions, feelings and fears.

So many PWPD find this through art, be it painting or crafts or writing.
While Parkinson’s Disease severely restricts our physical and mental activities,
there is one advantage.
Whether it is the disease itself or the side effects of the medication
but it seems to stimulate the creative areas of the mind.
So it is only in the last two years I have begun
to compose and express my feelings through my poetry.

The main themes of my poems are about coping with Parkinson’s Disease
or any disability and the fears and hopes and also about our
relationship with Nature and with ourselves.

So enough about me, I hope that you will enjoy the
rantings and ravings of a mad Corkman and that my words may
stimulate your mind and make you think about life,
changes, and above all, appreciate this wonderful
gift we have been given.

–  c/ Denis Murphy 23 April 2017. 

_______________________________________________

 Background information on the poem – A Parky in the Pub

This is the first poem I ever wrote about Parkinson’s. So it was an important step for me
in revealing my personal feelings and exposing my emotions publicly.
I used humour to write about a serious subject.
I do not like the term “Parky” but in this case it’s just a play on the word party.

______________________________________________

A Parky in the Pub

I’ll head down to the pub for a drink and the craíc
Sure I’ll be dead long enough on the flat of my back
So I make my way down to my local bar
On the other side of town for a chat and a jar
Some sit alone, some sit together
Talk of the match or of the weather
And after a pint or two
I need to visit the loo
So I shuffle and stagger around tables and chairs
Aware of the glances, the pity and stares
Through the noise and the clatter
The gossip and the chatter
I make my way back to my friends and my table
Slow progress but thank God I’m still able
The lads at the bar exchange advice and opinions
To the world’s problems and all their solutions
While the girls at the table share secrets and giggle
And walk pass the lads with a sway and a wiggle
The winking and nudging, the secret half glances
Some of the lads even fancy their chances
The smutty jokes and clinking glasses
The lad’s loud laughter like braying asses
As they drown out the music like crows in the nest
It’s time to go home for some peace and some rest
So I say my goodbyes in words and mumbles
And make my way home in staggers and stumbles.
The journey home seems twice as long
But I’m on the right road not gone wrong
Two steps forward one step to the side
Steady as she goes watch that stride
Left foot right foot no downward glance
Sure I might yet get to star in River Dance
– c Denis Murphy Aug 2015

______________________________________________________

Thanks so much to Denis for todays Saturday Submissions post. Be sure to check out Denis’ own blog and make a connection. I love the poem and the play on words here to show the symptoms of Parkinson’s akin to those of being drunk. How do you feel about his poetry, does it resonate with you? Be sure to leave some feedback for Denis and share the love! 🙂

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any word count) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

Doing a dry run test for London!

So yesterday and today I have been doing a dry run for London, meaning I have to try and stay up for at least 11 hours straight, without bad symptoms kicking in, to be able for my flights and trip to London on May 13th. Sounds easy right?… yeah! I am having trouble and I still have 3 hours to go today!! I usually last about 4 to 5 hours up before bad symptoms and desperate fatigue get in the way and I need to rest in bed again so I need to be able to do this to go on the trip.

The itinerary starts for the trip on May the 13th at getting up at 5am to check in on time and fly out for the 7:30am flight to London, then I have to make it to London and to the specialists appointment at 12:30pm and wont be at the hotel until at least 4pm, so that is 11 hours from getting up at 5am! Then and only then will I be able to rest for the first time on the trip. To anybody else this would be simple but not for me.

I got up at 9 yesterday and made it to 8pm last night, then watched The Expanse and then passed out cold in bed for a couple of hours, I really needed the sleep and symptoms had kicked in pretty bad throughout the day. I simply do not have the stamina and health like I did the first time I went to London so I decided to do another dry run of it today. I got out of bed at 10am this morning and I have to make it to 9pm tonight and I have to say I am finding it tough!

I have the tickets bought for the trip and I really don’t want to have to change or cancel them so I have to be safely able to do this without bad sickness and symptoms getting in the way.

If I do this successfully, Ill let you know, but, I am finding it hard and may have to change the itinerary around a little to be better able to compensate my physical needs, but hopefully that wont need to happen.

Here’s to the next 3 hours, let’s do this!!! (I hope!!)

Lette xxx – (Fainting Goat!)

Saturday Submissions – With Dr. Liam Farrell

It’s a day late, I know, I know, I’m sorry – (It will be worth it, promise!) I haven’t been well in the last few weeks, I completely forgot all about Saturday Submissions last week and then I do it a day late this week, oh dear! I can do better than this, surely!!

________________________________

This week I speak to Dr. Liam Farrell, yes, a real doctor, or at least used to be a family GP, now better known as an award winning columnist and broadcaster. You can find Liam over on Twitter as @drlfarrell.

 

Why presentations are best served rare

We are doctors; we do terrible things to people. They come into the surgery like healthy folk and go out as patients. If they’re really unlucky we confine them to an institution where the occupants are routinely left immobile, deprived of sleep, fed a diet that is tasteless and nutritionally marginal, and experience the de-humanizing indignity of being half-naked all the time.

‏The average age of a patient in general practice is 75 years old.. Many have multiple diagnoses, and their care is incredibly complex, and above all requires more of our time. But our time is in increasingly short supply, so much of it wasted on the worried well and on health promotion. If we reckon on 15 mins per consultation, a family doctor with 2500 patients would spend 7.4 hours per day to deliver all recommended preventive care and 10.6 hrs per day to deliver all recommended chronic care.

‏This leaves a generous 6 hours every day for those pesky acutely ill patients, sick certs, insurance and passport and DLA forms, paperwork, eating, sleeping, banging our heads against the wall in sheer frustration, toileting and reproducing. But what is never understood, by patients, the general public, the media, bureaucrats, managers or politicians, is the huge numbers of people family doctors see who aren’t sick, and who have nothing wrong with them; this really can’t be comprehended unless you sit in with a family doctor for a whole surgery. A huge part of our job is telling people what they don’t have. Unfortunately, ‘nothing wrong with you’ is a retrospective diagnosis and can only be made after the consultation.

As the threshold for attending healthcare services grows ever lower, there are more and more worried well, too much screening and over-treatment. It becomes harder and harder to pick out the really sick person from amongst the ranks of the worried well; when you are looking for a needle in a haystack, the last thing you need is more hay. There is consequently not enough time and resources to the really sick; so everyone loses, especially those with hard to recognise rare diseases.

As The Fat Man said in The House of God, when a medical student hears hoof-beats outside a window, he thinks it’s a zebra.

Which might be true, of course, in certain circumstances – if you were in practice in the Serengeti, for example (curiously, I was once in the Serengeti, heard hoof-beats outside my window, peered through the early morning mist and saw only an old cow).
A medical axiom used to be that common things are common and uncommon presentations of common diseases are more common than common presentations of uncommon diseases. But this is now known to be misleading. Taken all together, rare diseases, and rare variants of common diseases, are not uncommon. And diagnosing rare diseases is very difficult; it’s not as if there is a are disease specialist we can refer patients to.

I do have some hard-earned experience. As an intern, I saw a young lad in casualty. He had fainted at a disco (yes, it was that long ago, Saturday Night Fever was quite fashionable. Old age is creeping up on me, not sure why but fairly sure it’s up to no good) and he had a few unusual skin lesions and a labile BP.

These days, I doubt if I would be able to recognise a phaeochromocytoma ( a rare tumour of the adrenal glands) if one walked up and assaulted me with a blunt speculum (I’ve been flogged into apathy by too many URTIs and sick certs, rare and interesting diseases only present to other doctors), but I was young then, fresh and sharp and so hip, I could hardly see over my pelvis.

I wrote ‘possible neurofibromatosis?’, ‘possible phaeo?’ on the chart and admitted the young man to the ward. I was too green to realise the importance of hoarding unusual cases to myself, for my own advancement, and sure enough, the rumour spread around the hospital as fast as an epidemic of flaming gonorrhoea.

Later, when I went to check up on my patient, I found him buried under a tide of medical students, SHOs and research registrars, all keen for a piece of the glory, all ordering 24-hour urines, all dreaming of a case report for the peer-reviewed journals and another notch on their CVs.

‘Help me, doc,’ he said, desperately, ‘they’re suffocating me.’ I whipped away the students, but the others were far above me in the hierarchy and I could offer little succour.

‘Sorry, pal,’ I said. ‘It’s a common complication of uncommon diseases.’

______________________________________________________________________________

Thank you so very much to Liam for providing todays Saturday Submissions!
What did you think of his post?
Do you relate as a medical Zebra?

Please leave a comment and let Liam know what you think, be sure to check out his Twitter Link and make a new connection! 🙂

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

Looking for Guest Bloggers Please!

guest-blogging

 

Hi folks,

I am still on the lookout for guest posters for this little bloggie, I would appreciate hearing back from anyone with or in contact with a chronic illness. Patients, Partners, Family, Friends, Carers, Therapists, Doctors, anyone who would like to take part. If you know of anyone who might like to, please share this with them, thank you!

It can be completely anonymous or open, whichever you prefer, please just follow the steps below to take part and I really look forward to hearing from you 🙂

Also, a very BIG Thank You to those who have submitted something already, I hugely appreciate the efforts, thank you 🙂

——— Wanna Be Part of Guest Blog Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

 

 

Lette 🙂