Ambulance Time Once Again!

On August tenth we had to call an ambulance yet again!
I had been in bed for weeks at that stage nursing a savage pain on the right side of my abdomen. This wasn’t the first time it has happened, and probably wont be the last! It got to a stage where I was trying to manage the pain myself at home, trying to avoid going into hospital, but I had to face facts and call it as it got too bad to manage on our own this time.

The Ambulance arrived promptly and began to tend to me. They were a crew of two, Male and female, and were excellent. Friendly, Professional, funny easing the mood when needed and seemed to take a genuine interest in what both Keith and I had to say and contribute.

Unlike the last few ambulance calls, this visit from them wasn’t rushed. It was calm, sedate and gave us time to properly prepare to go into A&E. While they took their time trying to locate a vein on my foot, Keith ran upstairs to the computer, got ready and printed off an A4 sheet with simple information on it about me and my condition, highlighting the main issues I present with, medication I am on and what would be needed when first admitted like fluids, Pain control and Catheterisation, etc.

The reason for this sheet was because through previous experience we have found to be constantly repeating ourselves while giving out my information to different people and yet only parts of the overall story get heard by all different people and nobody has the full story! This time we  said we would try getting this sheet in as a common denominator of information in my files so that everyone will be literally be on the same page regarding my care and see what happens. It was worth a try at least.

After getting a vein in my foot and administering some morphine for pain relief, we were eventually ready to go to the hospital and the ambulance crew were brilliant with everything as well as taking on the information sheet, which they said they thought it was a fantastic idea and wished more people were that organised!

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We quickly made it to the hospital, after getting more Morphine on the Ambulance, I was brought straight into the A&E main area, Thankfully I wasn’t rushed into Resus at any stage this time, it was calm and sedate and a far better visit this time round.

I was delighted to hear back from the Female paramedic that she passed on the sheet Keith had given her, to the triage nurse and that the nurse also commented on what a good idea it was to have all the main things highlighted on one page where everyone can see it. She said she would put it in my file so that all the doctors would see it too. So far so good for our little A4 sheet!

While waiting around for a short while, waiting on the triage nurse to find a place to put me as it was busy in A&E that day, The Paramedics were chatting to me and told me they knew some student and new paramedics who were doing papers based on me for some exam that was due the next week! Morto! I found it funny that they would pick me based on my rare or under diagnosed EDS condition or as I like to call it, ‘my awkwardness!’ :p

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.
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After spending no more 24hours in A&E this time around, I was admitted to the surgical ward. While in the A&E I had all the usual tests, xrays, scopes, exams, the usual trouble of about 50 different doctors trying to get a vein after a brief moment of being cocky and saying something like, “Oh I’m good at this, don’t you worry”, or,”Oh really? Bad veins, huh? well, I like a challenge!” and then just end up being unsuccessful anyway! That always provides me with a giggle especially towards the cocky ones who think I wont post a problem, cha! Say that to me after 20 mins of trying hopelessly! :p Being admitted after 24hours was quick though, considering that I have often had to wait over 46hours before.

I always like being admitted to the surgical ward. Not only does everything seem to be more up to date and cleaner, but Compared to the medical wards, The mood on the ward is generally brighter both from the staff and the patients. The Nurses seem to genuinely care, are not as dismissive as others I have encountered on the medical wards. They get upset when you get upset, they don’t like to see you in pain or discomfort and as much as they are able, they won’t keep you in pain for long and will treat you asap when they are asked to, a lot of the time, they don’t even need to be asked, they will notice themselves and will get you what you need to help ease your discomfort. Also, the electric beds are well cool! :p

I saw My Surgical team the next morning bright and early and they took the situation serious when they saw I had lost over 3.5 stone with the nausea, vomiting and general pain and discomfort I have been having with my gut issues.

As well  as my pain team to cover my Occipital and Sacroilliac joint Nerve Blocks which were due once again, They called in a dietician, a tissue viability nurse to talk about any difficulties I may be having with the chair, thankfully theres nothing serious going on there but she wanted to refer me to a Dermatologist for a small bit of irritation caused by the chair that was easily sorted with some long term antibiotics (starting with an 8 week course and if it needs to continue after that it could go up to 16 weeks), will just have to wait and see how it works. Then they wanted to get a serious OT assessment for me as my own local OT never properly assessed me for manual chair or a bed, given my situation, these are the two basic things my surgical team wanted to be covered while I was admitted.

The Dietician was concerned for my weight loss compared to my height and prescribed a high fiber, high calorie diet as well as Fortisip Calorie drinks to take twice a day along with my usual daily food intake to help at least maintain my current weight if not try to increase it. Sshe also prescribed a new tummy med to take with the other ones I am on to try and help with the nausea and vomiting as well as to try and increase appetite. So I have now started these and I was thinking of doing quick video reviews of the different drink flavours on offer, if you are interested that is! Let me know and I will do it if you like 🙂

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Throughout there was non stop testing to find out what was causing the pain in the right side. Xrays, Ultrasounds, CAT and MRI scans, Scopes, blood tests, you name it, it was done.

In the Ultrasound Room!

In the Ultrasound Room!

One outcome is that they have ruled out any Gallbladder issues. There definitely seems to be Sphincter of Oddi, Severe Gut Dysmotility and Neurogenic Bladder Dysfunction problems, as well as a large and painful Lymph node on the inside of my right hip which is causing a lot of pain too and is currently under investigation, all these are contributing to the pain as well as the Ehlers Danlos Pain itself, but they have ruled out Gallbladder and Appendix issues, which is good!

I had 2 major cardiac events while I was in, though I had been battling low Bp all week, these events were the opposite, they came out of nowhere in the middle of the night, they were raging high bp and very fast heartrate, the ecg showed some abnormalities but thankfully they didn’t stay long (about 2 or 3 hours) and after they administered some medication to lower my bp and hr, I seemed to return to my regular low bp self, they were scary though as the pain in my chest when it happened was frightening and I was soaked through with a tempreture. The nurses seemed concerned as Long story  events came out of nowhere. Thankfully though after a few hours I returned to normal and could get some sleep.

Long story short, I got to see everyone that was called for me except OT. The final team was the pain team with the good professor who loves to give injections and this time was no different! He administered my usual Occipital and Sacroiliac joint nerve blocks under ultrasound which he did at my ward bed, he had a little portable ultrasound machine or at least that’s what it looked like and he went for it there and then. The pain team in conjunction with the anestetic team said that I may have chronic piritonitis ( information or even tearing of the abdominal lining that holds your organs) this is still being investigated and will continue as an outpatient appointment along with all the other teams I had to meet while I was in.

The surgical team try everything they can and they are so good to want to learn but they still are not sure exactly what is causing the severe pain and weight loss. I had mentioned to them about a Gastroenterologist specialist in Cork university hospital who is very well up on EDS and speaks regularly as well as trained under Prof Aziz over in London whom I hope to see as soon as i am able to travel. They said go to see him, just to see if he can help and my surgical team said they would be delighted to consult with both him and Aziz going forward as they are of the mind that more on the overall team to help me then the better!

In the meantime my team wanted to bring my case up at an EGM (emergency general meeting) where the head consultants and specialists of a department get together and discus special cases at a count table meeting so that other people’s views and suggestions can be taken on board, then once they have news they  will call me for a new outpatient appointment or send me for further tests if required.

 Unfortunately the OT never turned up and there were questions as to wether she would turn up anyway as she usually only sees Stroke and Neurology patients so my surgical team along with the head nurse on the ward rang her boss as well as had to write a letter in order to argue the case as to why they felt I was a special enough case for her to make an exception and come and see me, alas I was left waiting all over the weekend just to see her and she never turned up so my team decided to send me home at this stage with some new meds and a ton of outpatient appointments and they would follow up with her to get me a much needed appointment as my local OT isn’t really doing what she is supposed to do. 

In the meantime I have made a new appointment to see that Gastro specialist in Cork, his name is Akbar and I have heard great things so I really hope he can help. That appointment is on the 20th of this month (September) and of course I’ll fill you in on how that and any subsequent appointments go.

For now, I’ll just chill and try to recover 🙂

Thank you as always for taking the time to read.

Lette ( the fainting goat!)

Finalist of The Littlewoods Ireland Blog Awards 2016

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I am delighted and so proud to announce that I just found out that The Irish Dysautonomia Awareness Blog here has made it as a Finalist in The Littlewoods Ireland Blog Awards 2016 under the Health & Wellbeing Category! 😀

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I never imagined we would even make it to the Shortlist when we did, but to make it as a Finalist? I can’t tell you how excited I am about this, and I have YOU, yes, all of you reading this, to Thank for making it this far.

This Blog is all about raising awareness of these under diagnosed conditions, and having people check out the blog for judging means that even just a few fresh eyes will see the blog and may learn something new that day about a condition they may have never heard of before, if that alone is all that is achieved from this then I am absolutely thrilled. I can’t believe we have made it this far, I am so happy! 😀

Thank you all!! ❤

From here, this Finalist List will now be judged by a panel of Pro Judges (Those who know the industry well) and no open voting this time. That final list then will be the ones that go through to the awards to possibly win.

I am utterly thrilled we have come this far and even if we don’t go any further, I couldn’t be happier with the outcome so far. 🙂

Also, I would like to take this opportunity to extend a massive congrats to Catherine Colbert of The Cripple Baby Blog, she also made it as a finalist and Blogs in the same category about Dysautonomia and related issues too! Nice one Lady! 😀

And of course, congrats to everyone who has made it this far in the Awards!

Once more, I can’t thank you all enough for your votes and support, fingers crossed this may go further, but if not, I think we did good! 😉

Cheers, I’ll keep you all updated as I find out more, Thank you so much for reading,

Lette (Fainting Goat)

Shortlisted? – Was Not Expecting That!

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WOW!! So in the last week a lot has happened.

I was admitted to hospital on Wednesday the 10th after a few weeks in bed, nursing a savage pain in the right side of my Abdominal area. I was released yesterday after a really productive week in! I will do a separate blog post highlighting what happened, but this post is about something most unexpected to me! 😀

I am delighted to announce that on Tuesday the 16th of August, I got an email to say that Irish Dysautonomia Awareness, had made it through to the Shortlist of the Littlewoods Ireland Blog Awards 2016! 😀 YEAY!

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Public Vote:

So now the voting begins and this is where I beg for your votes! –  Well it begun on the 17th and runs until the 23rd but I have missed out on a few days because of the hospital stay.

The public vote opens at the Shortlist stage, and accounts for 20% of your mark (80% comes from peer judging).

If you would be ever so kind as to click on the image below and hit the Vote Button, just be aware It will open in a new window or tab. I would be eternally grateful! 😀 It will ask to verify your vote with giving an email or signing in with Facebook, this only takes a few seconds, so thank you so much in advance.

Please Click Through Here To Vote

Please Click Through Here To Vote

Remember, this is not about winning, and completely without trying to sound humble I don’t expect to get anywhere further, but to raise awareness of this condition through opening this blog up to even just a few more people, would be fantastic for all of us. Thank you!

Lette – Fainting Goat =)

Made The Longlist of The Irish Blog Awards 2016!

 

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WOO!! So not only did the Blog make the long list finalists for Best Health and Lifestyle Blog in The Irish Blog Awards 2016, but also one of my blog posts, ‘The Good, The Bad and the Emergency‘, made it onto the the long list for Best Blog Post!!

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I am delighted and I have you all to thank for adding your entries for the blog! I cannot tell you how much I appreciate it 🙂 From here on, as far as I know, The blogs will now be judged by a panel and then those who make it onto the shortlist may need to get votes for the remainder of the judging so if I ever even make it that far, I may be back to ask for some votes! :p

For now, Thank You all once again and I will keep you posted on how everything goes 🙂 ❤

Lette (Fainting Goat)

The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

I am delighted to say that Irish Dysautonomia Awareness has been entered into this years “Health & Well Being” – Personal Blog – Category in the blog awards nominations and hopefully will make the long list at least, that’s where it got last year so to make that again would be really nice! 🙂

If YOU would (Please) like to Nominate this blog Please click HERE (Give it a minute to load, it can be slow!) or click the image below and follow the instructions. I would greatly appreciate your input, THANK YOU! You need to register with the site but you can do so quickly and easily  by signing in with your Facebook and you can control what information you give them.

Please enter The Title of the blog: Irish Dysautonomia Awareness,
Also pop in the URL of this Blog which is: https://irishdysautonomia.wordpress.com
also please be sure to enter it into the ‘Health & Well Being’ – Personal Blog – Category.
Thank you ever so much!

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Please click here and enter the info to Nominate this blog! – THANK YOU!

This year there is also an entry to nominate your favorite Blog Post from the blog here. In the last number of months the post that has raised most interest seems to be this one:
‘The Good, The Bad & The Emergency – Part 1’

I would also greatly appreciate if you have the time, to maybe nominate that blog post Please and thank you most kindly! as far as I can figure, there’s no harm in trying! 🙂

It is the same process as the first, please click Here:
Hit ‘Nominate a Blog’ – Enter the ‘Blog Post’ Title as: The Good, The Bad & The Emergency – Part 1

The Blog Post link is : https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

The Category is ‘Best Blog Post’ – Personal Blog

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Please Click Here and Enter ‘Blog Post’ Details (As I have laid out above) for Nomination – Thank You

Thank you so very much for you time in doing this each and every year, I may be back to you for more support if we make it to the ‘public vote’ part but even if it doesn’t get anywhere, a few more people will view the blog as a result of just entering and further our much needed awareness, even just a teeny bit.

Thank you once again,

Lette – Fainting Goat!

Blog Awards Ireland Long List Nominee!

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I am delighted to announce this humble little bloggie made the Long List in Best Health and Wellbeing Blog category in the Blog Awards Ireland 2015!!

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This is only a start, The long-list will be further reduced to a short-list, which will be announced on the 2nd of September 2015. The shortlist will then be opened up to a public vote which will begin on  7th September 2015 and stay open for 2 weeks. 

So if we make the Shortlist, which I think is a bit of a longshot, I will be onto you all again for a few possible votes! 🙂

This is only a small step but I am delighted because any cause for awareness of this condition is so welcome and needed.

Thank you to everyone who put this blog forward, I greatly appreciate it ❤ ❤ ❤

Stay posted to see if we actually get anywhere! 😉

Fainting Goat (Lette)

A Year Today!

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Can you believe it is a year today since I took my first trip over to London to meet with Prof. Rodney Grahame at the Hospital of St. John and St. Elizabeth?

While I was there, I had some tests and I received a confirmed diagnosis of EDS (Ehlers Danlos Syndrome) Hypermobility type with Gastro issues. You can read the full blog post I did about that experience Here.

The diagnosis and treatment plan I got there proved invaluable to me here in Ireland to help my Doctors treat me and even still, I am still waiting for my Harolds Cross appointment to help me get back walking!

I was due to go back over to London for further tests and much needed treatment but I have been too unwell and practically housbound when I am not in hospital over the past year to plan anything. I have been admitted to hospital 5 times since my visit over and I also have been diagnosed with Gastroparesis in that time.

However, things are getting worse especially in the Gastroparesis area of things and I still need to get back for the treatment as soon as I am well enough to travel and make plans.

The Medical fund is always open if anyone would still like to contribute or even just to share the link, I would greatly appreciate it, because without it, it would be impossible for me to pursue the correct course of treatment as there are no EDS specialists anywhere in Ireland and traveling abroad is not fully supported at all under the HSE travel abroad scheme.

I would just like to take this opportunity to say Thank you to everyone who has helped so far, to my family and friends and especially my amazing husband Keith. You have all been so supportive and helpful and I couldn’t have done it without you 🙂

Thank you,
Fainting Goat (Lette)