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!

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.

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 🙂

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!

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!)

Made The Longlist of The Irish Blog Awards 2016!

 

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!!

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)

Neurogenic Bladder Dysfunction

Yup, I have yet another diagnosis!
This time I have confirmed Neurogenic Bladder Dysfunction. Though I have had some of these problems in the past, I first started having acute symptoms and was admitted to hospital last December (2015) and it was later confirmed after a Urodynamics Test showed little to zero activity in my Bladder on the 15th of March this year.

My first symptom was Urinary Retention. I would get the feeling to go and then couldn’t, it was awkward and then went 3 whole days without going. Lets just say it got more than a little uncomfortable with pressure, Sharp pain, severe nausea and I probably should have went to the hospital with it sooner as it can be very dangerous not being able to pee!

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According to the Wiki:

Signs and symptoms:

Urinary retention is characterised by poor urinary stream with intermittent flow, straining, a sense of incomplete voiding, and hesitancy (a delay between trying to urinate and the flow actually beginning). As the bladder remains full, it may lead to incontinence, nocturia (need to urinate at night), and high frequency. Acute retention, causing complete anuria, is a medical emergency, as the bladder can stretch to an enormous size, and possibly tear if not dealt with quickly. If the bladder distends enough, it becomes painful. In such a case, there may be suprapubic constant, dull, pain. The increase in bladder pressure can also prevent urine from entering the ureters or even cause urine to pass back up the ureters and get into the kidneys, causing hydronephrosis, and possibly pyonephrosis, kidney failure, and sepsis. A person should go straight to an emergency department or A&E service as soon as possible if unable to urinate with a painfully full bladder. – Wikipedia/UrinaryRetention

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I rang my doc for advice and he told me to go straight to A&E, he explained that urinary retention is considered a medical emergency and that I should be seen straight away if I go in. So I got my things together and went  in not really knowing what to expect, but at this stage I was in dire pain and discomfort.

When I got to the A&E I was surprised to find that they did treat it as an emergency and took me straight in, catheterised me to relieve the discomfort (that felt amazing, eventually, though it took an hour or more for the discomfort to subside only a bit, but it was enough to get a bit of comfort!)

Lots of blood tests and scans later they decided to admit me for more tests and observation.
I was in hospital for over a week as they needed to flush my system with antibiotics and fluids as there was blood found in my urine and an infection in my bladder and kidneys. A urology nurse had to come to show and explain to me that I had the option of using the full time Foley Indwelling Cathater that they had me on in the hospital, which is pretty intrusive to be honest, or I could use these small intermittent catathers that almost look like little lipstick tubes or even tampons, but small enough to fit in a purse and look rather inconspicuous.  I can use these whenever I need them and I wont have anything attachment to me full time.

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According to the Wiki:

Advantages: 
People with neurogenic bladder disorders like spinal cord injury, spina bifida or multiple sclerosis, and non-neurogenic bladder disorders like obstruction due to prostate enlargement, urethral strictures or post-operative urinary retention, need to be continuously catheterised to empty their urinary bladders. But such continuous catheterisation can lead to problems like urinary tract infections (UTI), urethral strictures or male infertility. Intermittent catheterisation at regular intervals avoids such negative effects of continuous long term catheterisation, but maintaining a low bladder pressure throughout the day. – Wikipedia/IntermittantCathaterisation

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Near the end of my stay the Urology team came to me with a ‘gift’!!! 🙂

My bag of intermittent cathaters! I actually smiled when I saw it. It was actually a cute set up! it came in a lovely stripy bag with instructions, Cathaters, Alcohol Hand Sanitation Gel, Sanitation Wipes and A Mirror to help you see where to put the cathater… like you didn’t know where to put it like, come on folks! but its a handy Mirror! :p

    

Once I got the knack of using them, and they tested my bladder to see how full it was after I went, to make sure I was voiding properly, and once that was all clear I could go home.

Over the next few months I needed to continue to use the intermittent cathaters daily and, despite a few small nicks here and there, I got very used to them.

I eventually was called for a Urodynamics Test on the 15th of March and after a dead performance from my bladder, they conformed Neurogenic Bladder Dysfunction.

It’s actually ok to deal with but people with this can be more prone to developing infections of the Urinary Tract, the Bladder and even can lead to kidney failure, so I am now being monitored to keep an eye on my kidney function and I need to come back in to do an updated urodynamics test and a kidney scan once every 6 months. Which I am very happy with considering the amount of medication I also take daily, I do worry about my kidneys and other organs being affected from long term use.

My next appointment for this test is in September and I will update you once I know about that 🙂

Chat soon, 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!

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

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!

EDS Awareness Month – 2016

Courtesy of Google Images

 

It’s Sunday the 1st of May 2016 and so kicks off Ehlers Danlos Syndrome (EDS) Awareness Month.

This year is pretty special in that there is a, now Sold Out, International EDS Symposium in New York, 3 – 6th May, where a host of working groups of some of the world’s leading Specialist Consultants, Doctors and many others, get together and will reclassify the diagnostic criteria for all Ehlers Danlos types.

I will let the amazing organisers, The Ehlers Danlos Society, tell you all about it, be sure to check out their website right ‘Here‘

” The Ehlers-Danlos Society is proud to announce an international symposium on Ehlers-Danlos syndrome in New York City, May 3–6, 2016, generously funded by EDS UK and the Ehlers-Danlos National Foundation. The symposium is being held in alliance with the EDS consortium in Ghent and medical professionals internationally.

The primary goal is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management.

We are excited to be working on a project that will change the lives of those with EDS. Updated diagnostic criteria, published in medical journals across the world, will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Finally our community will have the foundations we need to ensure more research, funding and recognition.

Very generous private donations have allowed us to get the symposium underway. We are extremely grateful for the support, but more needs to be raised to make this most important event a complete success. Help us “Make our Invisible Visible” by donating to this project; anything you can give will be very much appreciated. To donate, please visit EDS UK or EDNF. “

This is very exciting stuff but I’d say it will take a long time for any of it to filter into the Irish Health System, but we have a few excellent EDS/HMS, Connective Tissue and Collagen disorder related groups here in Ireland who work tirelessly to spread more awareness and the most up to date information and research. Here are the ones I am most aware of, if there are any I have missed and I’m sure there are, please, really please let me know of any more Irish related Connective Tissue groups.

Please click on the names below to be taken to these pages. Also be aware that most of these links also have Facebook and Twitter pages as well as private, closed support groups for patients and relatives be sure to ask at the links below if you are interested in joining.

EDSAwarenessIreland 2016 EDS Awareness Month Logo 

EDS Awareness Ireland

Irish EDS & HMS

Marfan Support Group Ireland

Marfan Research Foundation Ireland

Irish EDS&HMS have a lovely page on their site giving an example of different connective tissue disorders that incorporate Hypermobility, as there are a few others besides EDS itself. Is certainly worth the quick read through. Find it , ‘Here‘

Only 2 weeks ago or less, Irish EDS&HMS also got the amazing opportunity to have a supporting clinician to sit on the International EDS Symposium in NY, they grabbed the opportunity, set up a fundraiser to send a medical professional from Ireland, worked incredibly hard, but unfortunately, though they got in touch with many people, they could not find someone on time to send over.

This just shows to prove how badly the medical support for EDS is here in Ireland. We have a few Consultants and Doctors with an interest, but no experts unfortunately. Hopefully this will change soon after the Symposium and EDS will be better recognised and supported here.

Thankfully though, there is another follow up conference in Baltimore in June where the findings of the NY Symposium will be formally discussed, any funds that have been collected already for the NY Symposium will be repurposed for the Baltimore conference where hopefully they can find someone in the medical community to support us with EDS.

If you would like to support the Irish EDS&HMS fund to send a medical professional to represent Irish EDSers in Baltimore then please, please donate ‘Here‘ or click on the image below.

Please click to support the Irish EDS & HMS Fund to send a medical professional to represent Ireland at the Baltimore EDS Conference.

This is so very important for the future of diagnosis and treatment of EDS here in Ireland. If a medical professional can go it means the information will be translated into the HSE quicker than if Irish EDS&HMS don’t get anyone and have to try and push the information into the HSE as patients or advocates themselves, they may not be taken as seriously or the information will not be treated as urgently as it would if us EDSers have the back up of a medical professional who already works within the HSE.

For the month that’s in it, here on Irish Dysautonomia Awareness, I will do my best to post regularly, share other people’s EDS blog posts share, photos, research and anything that will help spread more Awareness of EDS throughout May.

Thank you as always for taking the time to read and if YOU would like to share anything EDS related with us, a post, story, photo, drawing, meme, video, research, ANYTHING! Please get in touch either via our email: irishpotsies@gmail.com or on the blog here directly, through Facebook, Twitter or even our YouTube channel, and I will be sure to share it on here and through the social networks.

Cheers folks, Happy EDS Awareness Month 2016, let’s make it a good one if we can 🙂

Irish Dysautonomia Awareness EDS Logo Version!

The Sphincter of Oddi and Other Stories!

Say that in the voice of the narrator from He-Man and you have a pretty formidable title there!

The last time I was admitted to hospital at the end of March, early April the surgical team came to the conclusion that I could possibly have something called Sphincter of Oddi Dysfunction (SOD) that was being masked by what they thought was Gallbladder pain.

In the last blog post I outlined what this was and that there is a test to check for it called an ERCP, endoscopic retrograde cholangio-pancreatography, a procedure that uses an endoscope and looks directly deep inside the duct system while taking pictures and measuring pressure. You have to be sedated or under general anesthetic as it is way deeper into your system that they have to look than a regular esophageal, stomach endoscope or similar.

While they do this, they inject some Botox into the tiny sphincter itself which relaxes it and allows it to open again. If after about 2 weeks your pain is gone, this is a sign you have the dysfunction. Sometimes if the pressure in the bile ducts is measured as too high or if the surgeon deems it necessary at the time they will cut the sphincter muscle first time.

Cutting the sphincter of Oddi muscle surgically during an ERCP is called a sphincterotomy. It’s generally effective and relieves symptoms of SOD about 70% of the time.

The long term cure for it? a series of ERCP’s where again I will be put to sleep and they have to cut the sphincter to weaken it to the point where it can’t clamp up any more. This should take a few turns because if they do it all at once and cut straight through it, there is serious risk of heavy bleeding and Pancreatitis with this so they do it in small stages over time to make it safer.

A video of the procedure can be seen here, if you have the stomach for it! 😉

Since coming out of hospital in early April, I have had a number of follow up appointments. I’v been seen by a gastroenterologist in Nenagh General Hospital. He reviewed my case and changed my pain meds saying that the morphine I was on was a spasmodic drug and wasn’t helping the pain in my side so told me to ween off them and start other anti-spasmodic drugs which he prescribed. He also gave me new antiemetic meds for my stomach and gut as I am constantly having trouble with it. He said getting back over to London to a GI specialist over there when I am well enough is greatly advised, but to wait until I am well enough.
He also prescribed me with a spray for under your tongue, usually used for people with angina but said as it’s job is to open the blood vessels and relax muscles that it may help the pain in my side, and it really does, although drops my blood pressure and gives me a cracking headache but I would rather have that than the pain in my side!

I have been to the Pain specialist in Croom hospital for more injections into my Sacroiliac joint and hips which usually takes about 3 days to a week to kick in, but of course I got cocky and tried to hobble out of the bathroom the day after getting them, without any chair, crutches or support, thinking I could do it and SMACK! I slapped off the ground hurting my hip, but thankfully not seriously so it has healed again and the injections have slowly begun to work to ease the pain in my lower back and hips. Unfortunately though they only ever last about a month so I am coming to the end of that relief already.

I was back into the University Hospital Limerick for a follow up from when I was admitted last and to see when my ERCP will be. I was told I should be called sometime this month so I am currently still waiting on the appointment and hopefully I will be called soon as it is getting very sore and uncomfortable.

and finally… My powered wheelchair finally arrived! I had to chase it up through the local OT manager because I was getting nowhere emailling my OT about it. The manager got things moving immediately once she knew I had been waiting nearly 2 years and the replies to my emails were just one excuse after another, it finally arrived a couple of weeks ago, Miles too big for me, refurbished and not new but mine, great fun and gives me great freedom! The powered chair deserves a blog post of it’s own so I will do that as the next post. It’s name is Marvin and I’ll explain where that came from too! 🙂

For now, that’s all my current news! 🙂

Got To London & Met Prof. Rodney Grahame

We were off to see the wizard, the wonderful wizard of… The Hospital of St. Johns and St. Elizabeth, in St. Johns Wood in London, Professor Rodney Grahame. Specialist Rheumatologist.

On a rainy Monday morning, August 25th, we rose early to catch our flight into Heathrow from Shannon, leaving Ireland at roughly 08:45am and Landing in England at about 10am.

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I had never been to England before so I was looking forward to the trip. After Landing, we caught the express train into the city where we could drop our things into the hotel, grab some food and gently meander around the locality. Though that didn’t last long, I was wrecked!

Considering I got no sleep the night before and had to be up at 5am to check into the airport I had to come back to the hotel for a while and take a nap before we were to meet with some friends for dinner that evening, the day had already caught up with me but the nap did me well and I went out and about where our friends showed us around some of the city (In the milling rain!) and took us out to dinner.

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It was the following day we were to meet the wizard and after a long and busy first day, we slept hard that night!

So, Up on the Tuesday, we strolled down to St. Pancras and Kings Cross Station where we grabbed a bite to eat and went for a walk afterwards to kill some time before the appointment. The time came and we took a Taxi to the hospital.

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Accessibility in London sucks… like really badly sucks, the Taxis and most busses are equipped to take individuals in wheelchairs but the city itself, the pavements are damaged and rough, few ramps, dangerous roads, unreliable traffic lights and most shops, cafes and places in general were stepped without lifts or alternatives for wheelies. The majority of the underground Tube stations were not accessible and Also, I hate to say it, but most people on the streets don’t care if you are in a chair or not, they will walk straight through you, in most cases. For such a big city it (Accessibility wise) was a bit of a disappointment.

I wasn’t sure of what to expect when I got to the hospital, but I wasn’t expecting what greeted us. A modern, beautiful building, all level access for chairs, open and bright and it even had a concierge beside reception, A CONCIERGE!! Seriously, inside the door ready to help! 😀 I was highly amused by that!!

ANYWAY!! Up to the 2nd floor we went where I checked in and was told wait in the waiting room. Before ten minutes passed, a door opened at the far end of the waiting room, and there stood a tiny, slightly frail looking man wearing a classy suit and a smile, It was the wizard, He called me in!

Prof. Rodney Graham welcomed Keith and I into his office where he did everything to make sure we were comfortable, even asking if the air conditioning was ok!!

I have to say he made an immediate impact as being a gentleman. I was only supposed to be booked in with him for an hour, he saw me for at least 1 hour 45 minutes.

He started by listening to my full medical, family and symptom history, taking notes as I spoke, stopping me briefly as I went to ask questions and clarify some things. He then went on to ask me a list of questions relating to family, symptoms, hospital visits, all my broken bones and injuries, asked about my pots and Gastro intestinal issues, everything! Then a physical exam where he measured my arm length, measured the curvature of my spine, did the Beighton Scale on me (The Beighton score is a simple system to quantify joint laxity and hypermobility) Checked each of my joints separately for hypermobility. Checked the elasticity of my skin, the blue in the whites of my eyes, checked my flat feet, the inside of my mouth for a high pallet and overcrowding, asking about anesthetic resistance which I have had at the dentist many times before. He asked me about cuts, bruises, bleeding, checked my blood pressure, height…

He went out of his way for a full hour and a half to rule out EDS of any type, then sat me down in front of him again, looked at me and said:
“You came here knowing what you had, you do know what you have, don’t you?”

I replied:
“I think so, but I need to hear it from you, Professor!”

He fully confirmed a diagnosis of EDS type 3 Hypermobility type, with gastro issues. Explaining to me in full how this is not a benign condition and that it needs treatment. He said he would write to each of my doctors and to me with a confirmed diagnosis, a full treatment plan and a recommendation for me to be referred to both a gastroenterologist and to  Harolds Cross in Dublin for intensive physiotherapy and rehabilitation to get me back on my feet.

He said we would wait and see how the Irish doctors and the HSE reacts to his letters and if nothing happens fast enough in the next few months he will recommend for me to come back over to his team for me to see Prof. Aziz (Neuro Gastroenterologist) and Prof. Mathias (Autonomic and Neurovascular specialist) for faster, although private treatment.

I also asked about the seizures and if Dysautonomia could cause them. He said he was not a neurologist but that people with EDS and Pots have had Non Epileptic seizures before, but he did not know if the seizures were caused by dysautonomia or something else, but that it has happened. He also agreed that it was most likely the medication that they were giving me to ‘treat’ the seizures, in fact, made it worse, giving that now I have stopped being prescribed these meds, I have had no more seizures.

I was delighted, It was so worth the money to fly over and meet him, even for the confirmed diagnosis itself. I haven’t received the letters as of yet but as soon as I do, I can presume my doctors will have gotten them too… I am very curious as to how they will react to what he has to say. Prof. Grahame is considered one of the worlds best Autonomic specialists, I would hope they listen to what he has to recommend for me and that treatment can finally get a proper run for its money! I would really love a chance at Harolds Cross for Rehabilitation. Anything to help me back on my feet again 🙂

We had one more day in London before flying home, we booked an extra day not knowing if Prof. Grahame would send me for some diagnostic tests or not but we had the day to ourselves.

A dear Irish friend of ours, now living in Stoke On Trent came down to London to meet up, it was the first time seeing her since Christmas and it was brilliant to catch up. We decided to go to the Natural History Museum to see the Dinosaurs and because it is free in! It was amazing! After a short wait in the queue to get in, the museum itself was fantastic. Not entirely accessible though, just be aware if you go there, not all areas can be accessed by wheelchairs but overall it is still definitely worth going to see and ended up being one of the highlights of the trip overall 🙂 Unfortunately we arrived on one of the last days that kids were off school, so the place was packed and the queue for the dinosaur area stretched the entire way across the museum, it would have taken well over an hour to get in and we decided not to wait, either way there was plenty for us to see, check out the photos I snapped on the phone! 🙂

After being about three hours at the National History Museum, we decided to head to Covent Garden where I picked up some pressies for the family and we caught a bite to eat, walked around for a bit and took in the sights and sounds before getting our friend back to Euston Station for her train back to Stoke on Trent, we said our goodbyes and Keith and I headed back to the hotel room, started to pack and prepare for the flight home the next day, then fell into bed.

The following morning we grabbed some breakfast and headed out to Heathrow, before long we were back on the plane home and it was all over. If I am to head back over which may very well be a possibility very soon, I will only stay for 1 or 2 nights as opposed to 3. London is expensive and you easily notice the extra day on your pocket just with eating and getting taxis alone But we didn’t know what to expect from our first trip and it was well worth going over to meet the man. I couldn’t have done it without the Medical Fund, and hopefully now treatment will get underway properly without any more doubts from the HSE.

My next appointment is on the 15th so I am interested to see how that goes and of course ill fill you in, so that is all for now, will leave you with some other shots from walking around London! Toodle pips! 🙂 🙂 🙂

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Social Welfare Cuts Ireland – 2014

Since going into the wheelchair, I have been in the process of applying for and filling out endless social welfare forms and other such applications now that my Husband, nor I, can no longer work given my current disability.

I never realised how much there was that needed to be applied for when something like this happens.

However,  what came as the biggest surprise is how the Irish social welfare system has completely stopped some payments to new applicants without any prior warning, explanation or alternatives given to replace these payments to those who need it the most, for example, the Mobility Allowance, The Motorised Transport Grant, Diet allowance and Mortgage Interest Relief have all completely stopped outright to new applicants, with many changes in other payments.

However, Those who are currently receiving these payments will continue to do so until the scheme is updated.

Those who continue to get these payments are getting a substantially higher payment and far more benefits than what is now available to new applicants. This is very unequal and unfair. I will highlight the rates of pay below that I have come across directly myself and I will outline a brief explanation of the changes in each of the aforementioned payments as of 2014 with some links for more information, as follows:

I am aware that I have highlighted only a few of the changes overall. If there are any payments that I have not highlighted or that I have overlooked please let me know and I can add it to the post, Thank you.

As well as the obvious recommended payments for people with disabilities like Disability and Carers Allowance. Which have been so far left alone this year, the following are the payments that have either stopped outright, stopped to new applicants or have changes:

THE MOBILITY ALLOWANCE & THE MOTORISED TRANSPORT GRANT

This monthly payment has now been completely stopped to new applicants with no updated news on a replacement scheme, which was supposed to be put in place last June 2013. People currently getting the payment will continue to do so but it will eventually be faded out in lieu of a replacement scheme.

What also has stopped to new applicants as of the same date as this, is the Motorised Transport Grant for those people who need adaptations to their car in order to keep their job. This was done so under the radar that a lot of people are completely unaware of the stoppage.

What worries me is, that The social welfare/Government will come along and say that the Free Travel Pass, that those on some social welfare payments are entitled to, will cover this Mobility Allowance, when it simply doesn’t. Bus Eireann Busses (that will bring you from rural areas to accessible areas of the city) are NOT Wheelchair accessible at all. So getting anywhere from a rural or remote area means paying for a Taxi or relying on others to transport you, which completely defeats the purpose and that is why the Mobility allowance and the Motorised Transport Grant is valid and needed.

Now in February 2014, there is still no sign or mention of a replacement scheme for those of us who need it most – info as follows:

The Mobility Allowance: As printed on Citizens information.ie on the 14th February 2014:

The Mobility Allowance is a means tested monthly payment payable by the Health Service Executive (HSE). It is paid to people who are aged 16 and over and under age 66, and who have a disability and are unable to walk or use public transport and who would benefit from a change in surroundings; (for example, by financing the occasional taxi journey). If an allowance is awarded, it will be continued beyond the age of 66 but you may not apply for the allowance if you are aged 66 or over.

There is no specific legislation in Ireland providing for Mobility Allowance. Instead, this Allowance was introduced in 1979 by the Department of Health and is payable under Section 61 of the Health Act, 1970.

On 26 February 2013, the Department of Health announced that the Mobility Allowanced scheme was closed to new applicants. An alternative scheme is being devised to replace it.

On 11th June 2013, the Department of Health announced that Mobility Allowance would continue to be paid to those already receiving it until the scheme is replaced.

Rates:

The allowance is paid monthly. The lower rate is payable to those who are availing of the Disabled Drivers and Disabled Passengers (Tax Concessions) Scheme. The rates for 2012 are:

High rate	Low rate
€208.50 per month	€104.25 per month

That is a substantial amount of extra money per month that some people are continuing to get, yet new applicants can no longer apply.

DIETARY SUPPLEMENT:

Another weekly payment that has been completely cut without any explanation as of the 1st of Feb 2014 is the Dietary Supplement.

Our local Social Welfare Employee told us that as the 1st of February fell on a Saturday this year 2014 (the day this payment stopped) She and the other workers only got the email memo sent about it when they arrived into work on Monday the 3rd, She said they got no prior warning or explanation.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

The diet supplement was discontinued for new applicants from 1 February 2014.

However, people who were getting Diet Supplement before 1 February 2014 can continue to keep the payment (for as long as they continue to be entitled to the payment).

You are entitled to retain the diet supplement for a prescribed diet, if you:

• Have a specified medical condition
• Meet the conditions for Supplementary Welfare Allowance (SWA) and
• Satisfy a means test

To get a diet supplement, a hospital consultant or a hospital registrar must certify:

• That you or your adult dependant or child dependant has been prescribed a diet because of a specified medical condition
• The type of diet prescribed
• How long you will need the prescribed diet.

A gluten free diet for an adult or a child aged 18 to 22 may be prescribed by your family doctor (GP).

In the case of diet supplements, for example, for people with cystic fibrosis, the long-term illness scheme book may be accepted as verification that such a diet has been prescribed. The length of time for which the diet is being prescribed and the type of diet must be stated.

Qualifying diets

The weekly cost of each prescribed diet is set by the Department of Social Protection. The following diets qualify for the diet supplement: (Some people are continuing to get these payments, but new applicants can not apply)

Qualifying prescribed diets	Cost of diet, €
Low-lactose, milk-free diet	65.43
Gluten-free diet	68.43
High-protein, high-calorie diet	71.43
Altered consistencies (liquidised) diet	74.93

HOUSING ADAPTATION GRANTS:

They are very difficult to get as funds are being held tight at the moment. I have also been told from a Social Welfare Employee over the phone that they have not been allocated the funds for 2014 as of yet and that I will more than likely not hear anything about this until next year 2015. I had all documents in since the end of 2013!

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Changes to 3 housing grant schemes were announced in January 2014 and came into effect immediately. The main changes to the Housing Adaptation Grant for People with a Disability are:

• The maximum income threshold has been reduced to €60,000 (previously €65,000)
• The percentages of approved costs covered by the grant have been adjusted on a sliding scale (but the maximum grant stays at €30,000, or 95% of approved costs)
• Extension works will only qualify if no suitable cheaper option is feasible
• An occupational therapist must confirm that the works are fit for purpose and that they meet the applicant’s needs in the most economic way
• Income of all household members will now be included in the means test (though Carer’s Allowance should be disregarded)
• Applicants must prove that they have complied with the Local Property Tax

The Department of the Environment, Community and Local Government say it is preparing revised guidelines for the 3 schemes.

MORTGAGE INTEREST SUPPLEMENT

This weekly payment has now been completely stopped from social welfare. If you are now having difficulty with your Mortgage payments you must speak to your bank in organising help with your payments, yet, once again, People who are currently on it or who applied before Jan 1st 2014 will continue to get payments for as long as they are entitled.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Mortgage Interest Supplement (MIS) provides short-term support to help you pay your mortgage interest repayments.

From 1 January 2014, the Mortgage Interest Supplement scheme is closed to new entrants and no new applications will be accepted from this date. This measure does not affect current claimants immediately (people who were getting Mortgage Interest Supplement before 1 January 2014). The scheme will be wound down for these claimants over a 4-year period.

If you are experiencing short-term mortgage difficulties your lender must support and engage with you under the Mortgage Arrears Resolution Process (MARP). The website, keepingyourhome.ie, provides comprehensive information on the services and entitlements available if you are having difficulties making your mortgage repayments.

RESPITE CARE GRANT

The Respite Care Grant used to be €1700 and is now €1,375 and is paid once each year, usually on the first Thursday in June, for each person you are caring for. It is not taxable.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Information

The Respite Care Grant is an annual payment made to carers by the Department of Social Protection. Carers can use the grant in whatever way they wish. You can use the grant to pay for respite care if you wish, but you do not have to do so. More information about respite care facilities is available.

In June of each year (usually on the first Thursday of the month), the Department of Social Protection pays the grant automatically to carers getting Carer’s Allowance, Carer’s Benefit, Domiciliary Care Allowance or Prescribed Relative’s Allowance from the Department. Only one Respite Care Grant can be paid for each person getting care.

__________________________________________________________________________

The long and short of this is, The Irish Social Welfare System needs to get the finger out and sort out their payments so that it is fair and considerate to all people on these benefits.

Some people are out of work, not by choice but because they have been forced to by illness or some other uncontrollable outside source. In these situations support from the state is expected and yet, never organised enough or forthcoming at all.

The only thing about this whole thing that bothers me the most is that the people who already are getting some of the payments will continue to do so until a ‘new scheme’ is written up, and there is no sign of that happening nearly a year after they said it would. New applicants need not apply, we don’t even get the chance to anymore.

This has caused a serious situation of inequality for those who find themselves newly disabled. These people are the most vulnerable in their new state, but receive no proper support.

These haven’t been cuts, they are a cost saving exercise at the expense of the newly disabled which is simply not fair.

I would love feedback on how any of this has affected you directly or affected someone you know. As always you can submit a comment here or write to me at irishpotsies@gmail.com, either anonymously or otherwise, I always love to hear from you 🙂

The HSE are Gone to the Dogs!

It’s such an Irish-ism but honestly, If my pup gets sick or hurt, I can choose to take her to any number of vets for prompt and reliable care. Think your dog can take their human to any hospital to get reliable treatment and care if they happen to get sick or hurt? Hell no!

I am sick of the HSE (Health Service Executive, for my non Irish readers) I am sick of their wasting of money, wasting of patients time, Their complete lack of communication within its departments and a complete lack of overall proper treatment for the, mostly public patients of Ireland. Private patients have their fair share of stories to tell too, I am sure, but as I am going through the public system, I will speak only from my own experiences.

This morning a letter arrived in the post. I opened it, only to find 2 shiny new medical cards, one for himself, one for me, valid for how long? …2 months!
WE ALREADY HAVE CARDS which are valid until Jan 2014! why are they printing and sending these out to us? I know this may be trivial but that is an utter waste of money, printing the cards, and sending them to people who have no need of new ones because we already have them! Especially when there are people out there who also deserve them and cant get them or those who have them, need them and are having them removed for no apparent reason!

You can read such stories, all published within the last few months, here;

Mum ‘incensed’ as medical card taken off Down Syndrome child

Hospital vigil held in protest at removal of medical cards

Chronically ill girl has medical card taken from her

HSE denies medical card cull

it is maddening!

The day before yesterday, The hubby recieved a letter from the HSE stating that he had been on a Vascular waiting list for so long at this stage that they wanted to know if he still wanted an appointment. He was never and has no need of ever being put on a vascular waiting list, what is this?!

About 2 months ago I recieved the same, stating that I had been on a Urology waiting list, again, I hadnt been, so why are these being sent out when people are waiting for genuine appointments and they are sending letters for phantom appointments that were never made?!

These are only tiny things. From my own experience, and from what I hear from others in the same situation, The HSE has broken down as a whole!

Yes there are success stories within the system, but it’s the minority that rarely get heard and treatment in this country for certain conditions, including most aspects of Dysautonomia, are simply non existant.

For example when I was in hospital, more than once, have I come up against a ‘so called’ specialist or Rheumatologist that said, “You dont have EDS, you have Hypermobility syndrome”

…?

I have said it before and I will say it again, that is like saying, “I am sorry, you dont have cancer, but, I am afraid you have… Cancer!”

IT’S THE SAME THING, MORON, with just a few risky extras, which I just happen to have! do some up to date research and stop living in the past!

In my opinion, and I doubt that I am far wrong, the only reason they argue or say this is simply, that if they admit to a condition, within the public service, which was diagnosed originally by a private specialist, then they, by law, have to provide public service care for that condition under the health system. There is no proper treatment available here for EDS, so you know, go figure…!

There are no specialists in Ireland who are qualified to deal with EDS or Dysautonomia. As patients we are palmed off on the cardiologist/geriatricians for Postural Orthostatic Tachycardia Syndrome because they cover some aspects of the condition, but certainly not all.

You are given over to the Rheumatologist/musculoskeletal specialists for EDS, because again, they know so much but not all about the condition.

By right, we should have a team of different specialists to cover our broad condition which would include: Rheumatologists, Neurologists, Cardiologists, Vascular specialists, Physiotherapists, occupational therapists, Pain management, Gastroenterologists and nutritionists, just to name but a small few, to cover every aspect of the condition intensively so that it can be properly managed.

That just does not happen here in Ireland.

If you require treatment like this, you have to pursue every medical angle separately, either privately yourself or through the HSE publicly, which takes years and there is very little, if any, communication within these departments, so that, files, information, xrays, appointments, you name it, either go missing or are never passed on to where they need to go.

It is frustrating, upsetting and makes our healing process go backwards, because, we get diagnosed, then do not get the immediate follow up treatment we need to progress in the right direction, instead you get ‘looked after’ over a very long period of time making your condition get worse while you wait!

The nearest Autonomic specialist is in London, his name is Dr. Rodney Grahame and he is known world wide for his contributions to research and development in this area. He is currently training a specialist to come over to Ireland to provide proper treatment over here, but it could take up to two years or more for that to be ready.

Getting to london without your own money for an appointment is impossible though unless some sort of fundraising is done. Either that or you can apply to the HSE Travel Abroad Scheme, which the majority of people get refused even though you may be perfectly entitled to it.

One irish patient with EDS, Jamie O’Brien had approval for his Travel Abroad application, went about making all of the necessary arrangements and just 3 days prior to leaving to go to England, the HSE retracted the approval. Meaning he couldn’t get the treatment he needed. You can read Jamies story here.

This has happened so many times, here is Aimee Foley’s Story and Sarah’s story Here. There are many, many more.

This has to stop. The time wasting, the money wasting, the lack of care, compassion or proper treatment. The lack of education of certain conditions within the HSE, the lack of communication or any organisation.

The health system is a disgrace and it’s time to fight.

Thankfully, there are a few very strong people within this little community of ours who are willing to make a difference and to fight for change. The EDS Awareness Ireland group have a few admin and members who have already spoken to those in The Irish Patience Association, Meeting up and pushing the issue with their own local TD’s, Writing letters direct to the current health minister and direct to media. There have been quite a few interviews on Irish TV and stories in the papers. Medical cards and a Rare Disease plan are now being considered for those with EDS, where it wasnt before. Changes are slowly but surely beginning to happen but still a little too slow.

We will keep pushing and fighting, it is all we can do for now! 🙂

New Wheels for Wonky Joints!

A little update for you.

This morning I had an early appointment to go visit my GP. My walking and pain have gotten worse, well the pain and discomfort has, the walking hasn’t really been there for a couple of weeks now anyway so, I have been trying to figure out what to do as I have been waiting for nearly 3 years now for a public Rheumatologist appointment in the Limerick Regional. I have been making lots of phone calls to see where I am in the ‘so called’ health system.

When I rang during the week to tell my GP the story with my legs, he said to ring the hospital and see what was going on with that appointment and to explain the urgency for it. Though I had done this numerous of times already throughout the last year, I decided to follow orders and do some more ringing.

It turns out, when I rang the public Rheumatologists secretary. That she did have my name on the waiting list and that they have received at least one letter from my cardio specialist (meant to be 3 letters in total at this stage, since april 2011!) but that I was viewed as a routine patient and not urgent therefore they can not give me a date as to when I might be called.

So as per doctors instructions, I explained my current situation.

“Look, ah, I cant walk… am, im currently being wheeled from room to room on an office chair…”

I actually am, its been my saviour the last too weeks, well, that and my poor hubby having to push and pull me everywhere in it, and jumps to my every whim. I seriously am blessed with this man!

Secretary – “oh, well, am, there’s nothing I can do now, unless you get an updated letter from your GP stating the urgency and that it is an emergency case…”

So after some questioning about certain letters, that look as though they may never have been sent for me to get an appointment in the first place, I return to my own GP on a last minute, early appointment so that I wouldn’t miss work this morning.

We arrive at the doctors house, Keith runs in to say we are here and he invites us in. Keith runs hack out to the car to help life me in.

…all manor of uncomfortable noises, grunts, stumbles and various levels of retardation on my part and I am finally on the doctors exam bed, thingy!

In walks the doctor and what starts to be nearly an hour where we discuss my options going forward for treatment and how the HSE has failed patients like us and doctors like my GP.

Our closest place for treatment, like proper, recognised treatment for dysautonomia and EDS especially, is over in London. There are no specialists of the condition currently anywhere in Ireland. There are a few doctors, specialists, physios and orthos over here who have a general interest in it, but no specialist qualification for treatment over here at all. This is an ongoing battle, we as patients are struggling through just to get the treatment we need.

He mentioned to me after a range of motion test on my legs, that a wheelchair may be in order to help with my loss of mobility. This condition can be progressive, especially without proper treatment and I have been on and off crutches for the past few years now due to increasing joint strains and pain in my legs.

and this is where we are!

I have done my research in trying to understand the procedure to get a wheelchair via the medical card or medical insurance, seriously long winded! I have sent a ton of emails for information on chairs so all I have to do now is wait to be assessed for the chair, and sure, I dunno how long more I could be waiting for that for! I’ll just have to wait and hope for the best.

I wouldn’t have used a wheelchair for long term use before, only for short term use, I am not sure how I feel about it yet to be honest, right now I just want some mobility back! Any and all advice would be greatly appreciated in that department. Thank you and i’ll keep you posted on what is happening. 🙂

Thank you for continuing to read if you are still doing so. Please note I always welcome guest posts, etc. so if you have anything you would like to post, blog, or even share over on our Facebook or Twitter, please feel free 🙂