May Is EDS Awareness Month – 2017

Yes, it’s that time of year once again folks, May is EDS Awareness Month and this year, I update my diagnosis story as it just grows in volume and substance every year since all this started in 2011!! So here I go again, it’s 2017 and my story is in need of a clean up and update, so let’s jump right into it!

So firstly, What is EDS?

Put simply, EDS (Ehlers Danlos Syndrome or ‘The Ehlers Danlos Syndromes’, as it is now known since March 2017) is a group of connective tissue disorders. Here is a better explanation according to the EDS Wiki:

” Ehlers–Danlos syndrome (EDS) is a group of genetic connective tissue disorders. Symptoms may include loose joints, stretchy skin, and abnormal scar formation.^[1] These are typically noticed at birth or in early childhood.^[2] Complications may include aortic dissection, joint dislocations, scoliosis, chronic pain, or early osteoarthritis.^[3][1]

EDS is due to a mutation in one of more than a dozen different genes. The specific gene affected determines the type of EDS. Some cases result from a new mutation occurring during early development while others are inherited in an autosomal dominant or recessive manner. This results in defects in the structure or processing of collagen.^[1] The diagnosis may be confirmed with genetic testing or a skin biopsy. People may be misdiagnosed with hypochondriasis, depression, or chronic fatigue syndrome.^[3]

There is no known cure.^[4] Treatment is supportive in nature.^[3]Physical therapy and bracing may help strengthen muscles and support joints.^[3] While some types have a normal life expectancy, those that affect blood vessels generally have a shorter life expectancy.^[4]

EDS affects about 1 in 5,000 people globally.^[1] The prognosis depends on the specific type.^[3] Excess mobility was first described byHippocrates in 400 BC.^[5] The syndrome is named after two physicians, Edvard Ehlers from Denmark and Henri-Alexandre Danlos fromFrance, who described it at the turn of the 20th century.^{[6]” –}

^{Ehlers Danlos Syndrome Wiki}

If you would like to know more about EDS types, symptoms and a host of further information then I highly recommend The Ehlers Danlos Society Website for more info.

My Personal Diagnosis Story.

Though I have had many medical issues throughout my life, my Chronic Illness journey only began properly in 2011.

One Tuesday morning in March, I woke to not feeling very well and as I was exiting the bathroom I called out to my husband who just happened to come and catch me as I passed out in his arms.

I continued to come to and then pass out again every time I straightened my legs. My Heart rate was racing and my Blood Pressure was dropping really low. My husband called the doctor for advice who told him to immediately call an ambulance or take me to A&E. He decided to drive rather than waste more time waiting for an ambulance which would take at least 30 minutes to get to where we lived.

On the way to A&E my husband had to keep shouting at me in the car to try and keep me alert as I kept needing to pass out. We finally arrived at the hospital, I was rushed inside and long story short, many tests and doctors later I was kept in for nearly a month where many further tests were performed, one of which was a Tilt Table Test with which I was diagnosed with Postural Orthostatic Tachycardia Syndrome (Pots) and Vasovagal Syncope (VVS) or Neurocardiogenic Syncope (NCS) – they are both the same thing, basically neurological fainting!

 

So where does EDS come into it?

In the 2 years following the diagnosis of Pots, I was hospitalized many times because of the fainting, low blood pressure and other complications. In the process of trying to figure out what caused the Pots, Hypermobility was mentioned a few times by a couple of doctors and physios, however, whenever I mentioned it to my Pots doctor (he is a geriatrician but he is the specialist who looks after me for my Pots), he didn’t seem to think it was anything to be worried about, even though I did have chronic pain and I did feel it was affecting me at the time.

As time went on, the pain became worse and I felt a formal diagnosis of Hypermobility would benefit me, though there are no EDS or Hypermobility specialists anywhere in Ireland, I still felt a diagnosis would help me.

I had heard about a Rheumatologist in Cork who knew about EDS and Hypermobility so I decided to pay him a visit just to see what he thought. Down I went to see him and within a few minutes of him seeing me he had me diagnosed with a ‘classic case of Hypermobility EDS’, with possible Classical EDS overlaps. I was surprised and kinda happy that I had finally confirmed my inkling that I had it.

However, this diagnosis from the Cork Rheumatologist wouldn’t be worth the paper it was written on… with my pots doctor anyway. He never accepted the diagnosis and just ignored it outright so I just had to live with the fact that my Pots was probably caused by the EDS but there was nothing I could do about it.

To help, my Pots doctor did organize for me to see a Rheumatologist in Croom hospital who confirmed my possible hypermobility and organized for me to do Hydrotherapy and physio at their facilities in Croom Hospital. Even that physiotherapist confirmed I had possible hypermobility but she never believed I had EDS. I found the HSE as a whole were fine to say hypermobility but would never confirm EDS (for fear they would have to treat me for it if they confirmed the diagnosis! I have always been paranoid that was the reason anyway… maybe not!)

You Said You Always Had Some Medical Issues?

Yup! I was even breached for a while before birth but thankfully righted myself before being popped out! When I was born then, I was born with a Fissure and a broken Tail Bone and throughout my life I always had gut issues, travel sickness and dysmotility and I was never without a cast, sling, crutch or some other bandage or plaster thanks to stupid injuries and broken bones which, even though broken bones are not symptoms of EDS I put a lot of my past injuries and ailments down to my EDS as you’re born with it, it’s with you from the start and I seemed to have a lot of various symptoms.

I am currently severely deaf and wear Bi Lateral Hearing Aids, I have and have had since the age of 7, Bi Lateral Sensory Neural hearing loss and Otitis Media with under developed eustachian tubes and auditory canals. My younger life was plagued by ear infections and severe ear pain.

When I hit puberty and teenage years the fainting, feeling really weak, Nausea, Dysmotility and chronic pain got bad with a vengeance and again all the way through school there are photos of me in slings and on crutches, it was crazy! I did do Karate though from the age of 13 and I was constantly breaking bones from it! Baaaaad idea with EDS but sure I never knew and the A&E at the time only ever treated the individual injuries and never looked at everything as a whole!

My teeth and gums gave me problems too. From the age of 13 to 16, I was with an Orthodontist and had braces for the full 3 years. As well as always having gum disease for as long as I can remember, They could never successfully freeze my gums, they had to do lots of injections and finally had to bring in a heavy chrome looking contraption thing to freeze the gums, either way lots of freezing needed. I also had receding gum and bone and every time the braces were removed my teeth would start quickly moving back to where they had been! I now know all these teeth things are problems of EDS.

Things Improved and I Returned To Work

After a little while things slowly began to improve, life from 2011 had been turbulent but in 2013 I decided the time was right for me to return to work. I had been working as self employed while I was running my Media Production Company from 2010 after I had finished my Masters of Science in College and it went very well while I had the energy for it and obviously while I was sick I became unable to deal with 12 hour days traveling all over the country for day long photo and video shoots so I decided something slower paced would suit me better and I found the perfect job working from home for Apple Computers. I absolutely loved the job and because it was from home it was sedate enough for me to deal with some symptoms and still be able to work but just as things had started to go well, about 4 months in I tripped over my Mums dog we were minding and wrecked my hip. Symptoms seemed to crack up from here!

Things Then Got Worse and I Went Into A Wheelchair and Had To Stop Work

Things got worse and worse from here, my hip pain was daily and excruciating, I had to go into hospital for investigations where I was advised to stop work because of my illness and to start using a wheelchair to help my mobility. Of Course, I didn’t want this at all and resisted it at all costs but had to give in, in the end as I simply just needed it and now I am glad I have decided to use a chair as it has given me much freedom in this restricted state.  Work however has stopped and has not restarted since stopping in 2013. It doesn’t look likely that I will ever go back to work as this is a progressive disease.

The symptoms continued to get worse and worse, I started having seizures, ended up in the ICU at one stage for a couple of days and I decided that going to a specialist in the UK was the right thing to do. I was hospitalized so many times where the doctors didn’t know what to do with me and didn’t accept my EDS diagnosis from the Rheumatologist in Cork and I was left with very little help or treatment.

Even my hydrotherapy and physio had stopped early in 2014 as I had fainted in the pool because of my Pots in the hot water and the physiotherapist didn’t want to see me back at the pool or gym until such time as I stop fainting… which is never! So unfortunately I havent been able to get back to that either since it stopped!

Prof. Rodney Grahame, EDS Extraordinaire in London, was the next port of call.

The Hospital of St. Johns and St. Elizabeth in London

I started a Go Fund Me and started fundraising to go to London. So many people generously helped out, Thank you to all, everyone was amazing, even a quiz night was organized and everything, I was blown away! I finally had enough to go and so I did, You can read all about the trip HERE.

Long story short, we got to London and I got a confirmed clinical diagnosis of EDS Hypermobility Type with secondary GI Issues and possible Classical EDS overlaps, from the Professor himself. He did up a great long letter and treatment plan to send to my doctors that couldn’t be ignored and I have found has helped me hugely since getting it. He referred me to Harold’s Cross which I did in Feb 2016 and you can read all about that time HERE and I find all doctors and nurses take the diagnosis far more seriously than the one from Cork. I have had no more trouble from anyone on believing or disbelieving the diagnosis. He wanted me to return to see Prof. Aziz a Neurogastroenterologist for further tests and treatment and I had hoped to return sooner than I am able to. I will be returning in 10days time (2.5years later) to see him and I am excited!

Why Didn’t You Return To London Before Now?

Simply put, I was too ill to fly. The past 2.5 years have been by far the worst in terms of my symptoms. My Nausea is daily and intractable, my dysmotility causing so much pain and trouble that I have been hospitalized loads of times because of it and what I have been diagnosed with called Sphincter of Oddi dysfunction has been causing severe pain and again I have been hospitalized because of this and other chronic pain. I have also been diagnosed with Neurogenic Bladder Dysfunction and have had complications because of that also.

My Neck has been giving me huge trouble. I am receiving Occipital and SI Joint Nerve Blocks for severe pain. My pain specialist thinks I have instability in my neck but that cant really be checked without an upright MRI, which I may also need to get, but again there is none in Ireland so this will have to be done in London if it is needed. At the moment he is treating me as though I have instability in my neck with the Nerve blocks and opiate pain meds until such time as I can get it checked properly. He has me in for a lie down regular MRI for which I am waiting to be called but he doubts it will show anything.

My Gastro issues are probably my worst problem. They are what I am hospitalized for the most and they never seem to go away. This is why I decided to visit another specialist in Cork, this time a Gastroenterologist who has studied with Prof. Aziz (the Dr. I am seeing in London for my EDS Gut related issues) I went to see him in Cork and he immediately identified all my problems and symptoms, took note of all the medications I am on and booked me in for a number of tests that may be asked for in London anyway.
In Feb this year I had a Barium Swallow test that showed up all clear which is great. Next Monday I have a Gastric Emptying test to do which is happening just before I go to London to see Prof Aziz. I will be flying out the morning of Sat May 13th. The reason I decided to go to this doctor in Cork was that he understood EDS, I heard great things back about him and the fact that he studied under Prof Aziz all meant that he could possibly help me out and so far I feel he has. He was the one who wrote the referral letter to Prof. Aziz for me and he said he would work with whatever Prof. Aziz says in his treatment plan.

So, When Are You Off?

All going well with my health (it has been very up and down lately, mostly down) we hope to fly out Sat Morning the 13th May at about 07:30am and landing in London around 09:05am. From here we may grab a bite to eat before heading to the appointment with Prof. Aziz at 12:30pm at The Princess Grace Hospital, where afterward we return to the hotel to rest.

That’s the plan anyway, lets hope that’s how it works out! I tried a dry run of trying to stay up for 11 hours (sounds easy for some but for me I find it difficult to stay up past 4 hours before needing rest) as 11 hours is the time it takes from being up from about 05:00am that morning until about 4pm which is roughly the time we will make it to the hotel at, thats 11 hours up. I tried that the other day and actually failed at 9 hours and needed to crash so bad! so I am worried I may not be able for this trip but I will persevere and hope for the best. My husband will be with me so at least I wont be alone when I go to London and of course I will update you all when I return. I really hope the good professor can help! 🙂

Lette (Fainting Goat!) xxx

Doing a dry run test for London!

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

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

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

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

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

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

Lette xxx – (Fainting Goat!)

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!

_____________________

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!

Latest Fund Update – Jan 2016

Please click on this image to be taken to the fund page – Thank You

GoFundMe Update
Posted: 19th Jan 

Happy New Year everyone! I am sorry that I haven’t updated in a while but I was pretty unwell over the holidays then life, the universe and everything got in the way since!

I have updated the blog with the most up to date hospital admissions, appointments and NEW NEWS about finally getting an appointment for the Harold’s Cross inpatient rehabilitative treatment, That had been recommended as part of one of my next medical treatment steps, by Prof. Grahame while I was over in London!

Read the blog update on: www.irishdysautonomia.wordpress.com

Harold’s cross starts on the 8th Feb. I will initially be admitted for a week where I will undergo an intensive daily schedule of Physio, Hydro and occupational Therapies along with pain and medication management to help me live and cope easier at home with these medical conditions that I have as well as making me more mobile and hopefully gets me out of the wheelchair for good!
I can go home Sat. And Sun. for a rest before being brought back up for another week if it is deemed necessary to continue. This treatment may continue for a number of weeks or months.

Once Harold’s cross is done for a few weeks, I hope to be well and strong enough to travel back to The Hypermobility Unit in London again for further diagnostic tests and to meet with specialist consultants who specialise in EDS, of which, there are none, in Ireland.

This time it has been recommended to me by my doctors here that I go meet with a Nurogasteroenterologist named Prof. Aziz who will be able to treat me in relation to my Gastroparises , Gallbladder and Slow Gut Motility problems, as the surgeon here has tried everything he knows but is lacking knowledge in relation to EDS in order to help me further.

My Pain Specialist Here has suggested I may need an ‘Upright MRI’ also to confirm or deny possible neck and head instability problems , as well as, possible Chiari Malformation.

It is more than likely a long shot but with the severe pain, migraines, Seizures, pins and needles , weakness and many other symptoms I present with, it is considered possible enough for me to get it checked as soon as I am able.

Again I would like to stress that, without this fund and all your help, my medical treatment and diagnostic tests would never happen as there is no specialist consultant or medical centre available anywhere in Ireland for EDS. People like myself, our only option is to travel. And the cost of everything medical abroad is impossibly and prohibitively expensive.

I want to take this opportunity once again to thank everyone who has helped out in this fund so far by Donating money or Donating your time in organising Fundraising events. I can’t thank you enough from the bottom of my heart.

Let’s hope 2016 brings good health to all of us 🙂

THANK YOU!
Lette xxx

*Please click on the image at the top of this post to go to the fund page
**Alternatively, you may click HERE 🙂

Jan 2016 Updates and Harolds Cross Rehab News!

The last time we spoke, I had said I would write back to update you on the last couple of hospital stays, latest medical related news and now I have heard back from Harold’s Cross RMDU and they want to book me in on the 8th of February so now that is also something to prepare for!

When admitted last in October, I was in for severe pain in the base of my skull and neck. With this pain I was having severe headaches that seem to come on worse just before a seizure kicked in, of which I was having many episodes prior to being admitted to hospital.

An ambulance was called because I had a strong seizure that lasted more than 10mins and over 30mins by the time the ambulance crew arrived. Though Keith told them I was allergic to Benzos, they said: “its the only way to stop her seizure now so we will give her some and watch her closely until the hospital anyway”

In the A&E I was immediately taken into Resus where they got me under control, monitored me for a while then placed me in a corridor again in the main A&E area. I wasn’t there for long as I very briefly remember Keith arriving to talk to me then apparently I went into another big seizure where I was rushed back into Resus again but this time I was kept in there for longer.

They put me on a phenytoin infusion to stop the Status Epilepticus  (a seizure that lasts too long) but of course I am allergic to these medicines so I had a bad reaction to the infusion at the IV site and my arm swelled up a huge amount, my BP dropped dramatically and I started presenting with Cardiac arrhythmia’s and it had to be stopped!

Once things settled I was admitted to a ward and eventually seen by a new doctor, A Cardiologist who said he would take over my care once I explained in detail that too many consultants are part of my medical set up that there is no communication between any of them. He was completely unaware of my situation himself at that time but once he realised I had in fact 3 very large old medical files (He was working off a new one that was put together only in the last 6 months and has none of my long history in it)  he ordered the old files to his office so he would read over them in detail and he said he wanted to be my head consultant, if I would have him, so that he could be the ‘go between’ amongst all the consultants! I said that would be great, but I have yet to meet him outside of this admission, I have an outpatients appointment with him on the 22nd of Feb so I will be eager to see how he wants to handle my care from then on. When inside I was seen by my usual Prof. Pain Specialist and he gave me Occipital Nerve blocks to help with the pain in the base of my skull and the severe headaches that go with it. These nerve blocks were a huge help numbing the pain and as a result there are less seizures with the less pain too.

Then over the first week of December I was admitted to hospital again. This time for something completely different… I couldn’t pee, I know, I know, not pleasant to talk about but look, this is the sexy life I lead!!

So once I explained to my doctor what was happening over the phone, Low body temperature and feeling very unwell the week prior, then all of a sudden, total urine retention,  he said get straight into A&E, apparently not being able to pee is serious, I hadn’t even realised so in I went and actually got seen straight away! A catheter went in, lots of questions asked to see if we could get an answer for it and all that could be found initially was it could possibly be the combination of medication I am on or the Gallbladder related severe pain and slow gut motility may have something all to do with this, we wouldn’t know until I was admitted and lots of tests had been done.

After a week of many scans, tests and some invasive procedures, I was put on what is known as Intermittent self catheterisation  for Urine retention because of Bladder and Kidney dysfunction. I was given a lil goody bag full of things to use for it (See below, I’m all girly about the bag, innit pretty?!!)  and I have to do this daily at home until I get called back by Urology to do more bladder and kidney function tests to see if I will continue this method or possibly be given a procedure to place a permanent catheter (I would really rather not have that, I don’t mind this method at all now that I am used to it!)

My pain specialist prof. came to see me because of the Gallbladder pain I was in too and though I had been given ‘anti spasmodic’ pain killers as is recommended to help treat the Gallbladder pain, they also put me on Morphine to take very regularly at home on top of the anti spasmodic pain meds, daily, to cover all the different pain I am under on a very regular basis. I don’t like being on Morphine at all, it completely messes with you sometimes but it no doubt helps the pain, it doesn’t even take it away but helps more than anything else I have been given.

Im currently still waiting on that Urology outpatients appointment.

While admitted in December, the Urology doctors also wanted my Gallbladder to be looked at again while I was in but my G.I. surgeon was on annual leave and I couldn’t meet him until the 5th of Jan. When I did, he was great as always, very thorough and not wanting to jump the gun with my treatment. He said to me,

“The easiest thing for the both of us would be for me to whip the bloody thing out, it would only take me about 40 minutes and you would probably be sorted. You do have sludge in the Gallbladder, but theres no guarantee that will ever turn into stones, it is dysfunctional but I don’t know with your EDS, could it cause more harm than good? given the possible healing issues and the fact that you have very slow gut motility and also losing weight, You may need that reservoir for fats going forward, even if it is faulty, so I don’t want to make too hasty a decision, even if it is causing you this pain.”

What he decided to do was take my mobile number, ordered my full documentation and files to his office so he could fully study my history before making his final decision on the matter and if he doesn’t decide to take it out, he said he would at least try to do something for the Gallbladder pain as it is arresting my life at the moment and I have lost a lot of weight since this all started in December 2014. He said he would ring me before that weekend and was true to his word and called me back on Friday the 8th but only to say they couldn’t find my old files! I suggested they may be with the new Cardio who wanted to take over my care while I was in, in October, as he wanted my files too, so I passed on the details and will wait a little further to hear back on that.

In the meantime, I have also heard back from Harold’s Cross RMDU. It had initially been suggested by Prof. Rodney Grahame in London that I get referred there as it could be great to try and get me out of the wheelchair full time but even though I was told in December 2014 that I had been referred up, I had heard nothing back all year. I only found out last week that they had my referral all along and that they wanted to admit me in May 2015 (Last year!) but due to a mixup I never got the appointment.

Mistakes can happen and it is sorted now, they want to admit me on the 8th of February for my first weeks trial where I will get intensive, Physiotherapy, Hydrotherapy, Occupational therapy and daily pain management techniques to help me live long term with my illness and hopefully get me more mobile, all the while being under constant nurses and a consultant rheumatologists supervision incase health things go south and they can refer me to a local hospital if that happens.

They will admit me for a week, Monday to friday and I will be sent home the weekend and brought back in again the following week if it is deemed necessary to continue the treatment. I have heard lots of reviews, many mixed but mostly positive, so I am interested to see how it will go for me, of course, I will report fully on how it goes and if I found it beneficial and suitable 🙂

Until then my next 2 appointments are on next Monday the 18th of Jan for a Pots Clinic check up and then on the 28th with the Prof. Pain Specialist who will give me some Greater Occipital Nerve Blocks (into the base of my skull/top of my neck) and Sacroiliac joint and hip Steroid injections.

It’s all go until Harold’s Cross kicks off and I hope to have a couple of blogposts up before I go up, so keep your eyes peeled and as always, THANK YOU so much for taking the time to read 🙂

Lette (Fainting Goat)

Happy New Year 2016!

Hey everyone HAPPY NEW YEAR!

I wanted to take this opportunity to thank everyone who reads and interacts with this page, and also to say that I am sorry I have been distant as of late but as usual I can only blame the illness with the physical restraints it causes when I have bad days (which are very frequent) and the lack of motivation it causes too!

I was admitted to hospital in October and December just gone and since coming home I haven’t been able to sit upright at the desktop for any length of time to update you all and for some reason my WordPress blog app on my phone wont work anymore, I think it needs an update or something! I also have regular hospital appointments starting from tomorrow until May so this year is busy with doctors and consultants already! I will update you on all of this in the next week 🙂

Anyhow, I am going to be making a little routine in my week going forward to allow for more regular updates and scheduled posts that can be planned in advance. That’s the plan at least!

Some of the more detailed researched posts I am thinking of adding in the next few months include:

POTS Tips: Updated Life Tips to make living with Dysautonomia and Pots a little easier.

Vaccines and Pots – Is there any connection? – an in-depth look at the real science, possibilities and organisations involved.

Can Diet Affect/Help With Your Symptoms? – Discussing diets and intolerance’s involved in our health issues.

Does Weather Really Affect Your Symptoms or is it  a load of Woo? – A look at the science behind how weather and air pressure may affect some peoples symptoms, and here’s why!

How Best to Navigate The Health Services System in Ireland – With many, many updated links and resources.

Exercise and Physio for those with EDS or Dysautonomia – A post from an experienced Fitness Instructor who also has EDS and POTS on how best to exercise, stretch and care for your body with these conditions and when is best not to exercise altogether! ( Ok I wont pull the wool over your eyes, it is me, but I actually do hold an Irish fitness Instructors qualification and have more than 10 years experience in the gym and exercise industry in Ireland believe it or not – yes, that was before anyone realised I had EDS! I will explain all in the post!)

If you would like to add or discuss your experiences or opinions in relation to any of the blog posts above, please add a comment or get in touch via any of the ways below and I will be sure to add the information required or contributed to the posts 🙂

Please bear with me, there is only one of me and as always, if anyone would like to help, suggest topics or discussions, contribute or add anything to the blog, please just get in touch anytime and I would be delighted to add your entry to the blog 🙂 The email as always is irishpotsies@gmail.com and the Facebook Page and Twitter are very regularly updated too so lots of ways to get in contact 🙂

Again, thanks to all of you for your support throughout 2015 and the previous years since this humble little blog started in 2011, I greatly appreciate it 🙂

Lette – The Fainting Goat – xxx

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! 🙂