Woo! Shortlisted for The V By Very Blog Awards Ireland 2017

V for Very Blog Awards 2017_Judging Round Button_Shortlist

I am delighted to announce that I just got an email from V by Very Blog Awards Ireland 2017 and Irish Dysautonomia Awareness, this humble bloggie, has made the Shortlist for 2017.

We are now onto the next round ‘The Finalists’ where the blog will be judged on:

  • How engaging, entertaining and informative is your writing?

  • How consistent is your blog? Is every nook and cranny taken care of?

  • How do you compare to other blogs? What makes you unique and stand out?

     

I just want to take this opportunity to firstly thank everyone who put the blog forward in the first place and also thank you to the judges who deemed the blog good enough to make it this far this year, I am delighted.

Thank you all once again and here’s to the next round!

 

Lette (The Fainting Goat)

 

 

 

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Longlisted in The ‘V by Very’ Blog Awards Ireland 2017

V for Very Blog Awards 2017_Judging Round Button_Longlist

YEAYYYY!!! This humble little bloggie has been Longlisted in the ‘V by Very’ Blog Awards Ireland this year under the Health and Wellness category, THANK YOU ALL SO MUCH for voting and putting this blog through for this round, I hugely appreciate it, thank you!!

Next comes Round 2 the Shortlistings where the blog shall be judged on:

Overall Blog Design
The Reading Experience
The Knowledge of the Writer
How Responsive it is on PC, Mobile and Tablet

hopefully we shall make it, here’s hoping!! Fingers and toes crossed!!

Thank you all once again ❤

Lette (Fainting Goat)

 

Blog Awards Ireland 2017

Hi all,
Hope you are all as well as can be, sorry about the little hiatus, I was in hospital and im only just out but more on that in another post, right now I am back for a bit of begging!!

It’s that time of year again where nominations for the best blogs in Ireland go forward for the Blog Awards Ireland and I have just entered this humble little bloggie in for the running.

If you have just a moment to nominate, and thats all it will take, please nominate the blog by scrolling down and popping in the blogs url at the following link

If the blog makes it to the Long List I will be back looking for further support from you so I just want to say a massive thank you to all who take the time to support this blog, THANK YOU!

Will be back soon with another medical update from while I was in hospital and more on my current new diet 🙂 Thanks all 🙂

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

Meeting Prof. Qasim Aziz in London

Day: Saturday 13th May

Time and Itinerary:

5:30am – Wake up, get ready!
6:30am – Arrive at Shannon airport

6:35am – Check in
6:45am – Get Breakfast

7:00am – Board Plane with the help of Disability Services

7:15am – Flight Take Off

8:15am – Flight Land at Heathrow

8:45am – Get through security and make our way to the Heathrow Express Train

9:15am – Heathrow Express arrives at Paddington
10:30am – Hang around Paddington for a little while, get coffee

11:30am – Taxi to Consultants Appointment at The Physicians Clinic at Devonshire Street
12:15am – In appointment place, fill out forms and go into meet Prof. Qasim Aziz

Prof. Aziz was very welcoming, I found him to be thorough, interested, very educated and deeply experienced with EDS and it’s comorbidities.

I had everything written out over two A4 pages, Which he said he was delighted with and wished more people would come prepared! It had My Diagnosis, Investigations done to date, Medications, All my doctors listed, Current Symptoms etc. So he went through everything with me.

To make a long story short I was there over an hour, he didn’t rush us at all and listened to everything both my husband and I had to say about all the symptoms, pain and weightloss I have been going through with my Gastrointestinal problems.

He did a few basic tests with me while I was there and then sat me down to explain what he believes is going on with me.

He reckons I am high in ‘Histamines‘, meaning that I am all inflamed and raw throughout my body as a result it all contributes to my various symptoms even outside of gastro problems. He said that a ‘Low Histamine Diet‘, would be of huge benefit to my lifestyle for 6 months and then I can introduce other foods back into my diet.

He added things like, taking probiotics 2 to 4 times daily with the diet as well as the supplements that I may be lacking in like, Vit.C, Vit B Complex, Omega 3 and Chelated Magnesium.

He went through all my medications and changed them about as well as adding some to help my tummy. Apparently a few of the meds I am on to help my gut are in fact paralyzing it, so I have to cut back on those and my opiates as they are slowing my gut function down.

As the LowHistamine Diet is sugar free, he has also changed the Fortisip Compact calorie drinks I have been taking as he said they are full of sugar, so he changed them to E028 Cartons instead.

He mentioned that he has had people like me come into him in wheelchairs and after this diet and the other extensive recommendations he gave, they are now walking, relatively cured and back to work, living a normal life once again as the symptoms are now controlled.

He also said that everyone is different and what may work for one person may not necessarily work for me but it is certainly worth a try for 6 months at the very least.

I still have a lot of research to do to get my head around this new diet but he wrote out loads of recommendations so I know what to look for, I found him to be very helpful.

I have already received his full report, he had it emailled to me within 2 days, by the Monday after the appointment on Saturday, I thought that was very smooth and professional.

14:00pm: Finish appointment and get Taxi to the Hotel.
14:35pm: Check in and unpack and relax for a few hours to recover from the morning.
14:55pm: Pass out for around 2 hours
17:00pm: Wake up and go get some food
17:15pm: Make our way to the food plaza across from our hotel and find a sushi place

17:30pm: Too tired to deal with crowds so decide to bring sushi back to the hotel to enjoy in peace. Then just relax watching TV for the rest of the evening as we were both wrecked and I was beginning to feel really poorly after the busy day. I did ok though but we didn’t get much sleep as there was a Hen party in the room next door to us so it was really noisy at times but either way we got through the night and were up bright and early the next morning, Though we were both impossibly tired and I was barely able to move!

We get up, shower and get ready, check out of the hotel and get a Taxi to Paddington again to get the HeathrowExpress train into Heathrow Terminal 2 to catch the plane.
We grab breakfast and all goes as normal through security and onto the flight.

I always laugh at the sheer difference between the security in Heathrow compared to Shannon, Shannon are so lazy about everything and you literally walk straight through without little hassle but in Heathrow they want to examine every inch of you and your bag, which is great that they are so thorough but the difference in the two always makes me giggle.

Either way we got home safe, landed, went to collect our dog from my parents house and hit for home where we both crashed and burned pretty hard! I know right, just one day and were done, useless we are! I felt incredibly sick and my husband caught a flu on our travels so he has been hit pretty hard too since coming back. We both still haven’t recovered properly!

Next up now is to make sure my doctors and consultants here get a copy of the report he has sent me and to start a food plan to get this diet started once and for all. I am still following the Low Fodmap diet until I have everything I need to start this new Low Histamine diet.

I am looking forward to the adventure over the next 6 months or so with this new lifestyle change, and of course I will share it with all of you as I go along!

Thank you once again to everyone who made this trip possible, John Steele and Mick Dolan for organising the Bowie Gig in February which raised €2000 each for both Zondra Meaney and myself and also to everyone who contributed through my Go Fund Me Page. I am deeply appreciative to all  of you for your help and support, thank you.

Lette (Fainting Goat!) xxx

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.

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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

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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

#REDS4VEDS Vascular EDS Awareness

 

It’s that time of year again where we all try to raise awareness of Vascular EDS, the scariest of all the EDS’s. It is in conjunction with Annabell’s Challenge and originally organised by @TheZebraMom and EDS Awareness Ireland. This campaign has gone global now (Well done to the creators!) so lets keep it going!

1: Wear Red
2: Snap a Creative Selfie
3: Be sure to use #REDS4VEDS
4: Share on all your social media accounts
5: Tag or Share with 3 others so that they will do it too and we can carry on the love!

Thanks Folks

Happy #REDS4VEDS Day! 🙂