Saturday Submissions – With Caroline from Living With PoTS!

Hi everyone! I’m Caroline, I’m a 21-year-old student, blogging about life with a chronic illness. You can find me on Twitter , The Mighty , and at my blog Living With PoTS

Whilst not yet diagnosed, I’ve been suffering from PoTS symptoms for around 7 years, which have dramatically worsened over the last few years. My main symptoms are severe dizziness and fatigue when standing, as well as joint pain (which is probably related to some other undiagnosed condition). Recently, I made the decision to use a wheelchair for the first time, which was a pretty big decision and something I want to talk about.

I want to start off this post by saying that choosing how and when to use a wheelchair is an incredibly personal decision, and this is only my own experience.

 

 

Why a wheelchair?

Ever since I realised that there was a genuine health reason for me being in so much pain, and not felt like I was being lazy, I’ve been trying to work around it. Whilst I can manage my day-to-day life relatively well, trips away are a massive struggle. Last month, I had what should have been an amazing trip to London planned for my best friend’s 21st birthday, two whole days of sightseeing, shopping and shows. Obviously, with it being such an important birthday, I wanted to make sure she had an amazing time, and that me being tired and in pain didn’t get in the way.

Worries

It’s safe to say, I had a lot of worries about starting to use a wheelchair. The practicalities: how do you borrow one? How do you steer it? Where are the brakes? The stigma: what will people think when I ask for one? And when I’m able to stand up out of the chair? And personally, admitting to myself that it was something that I needed, on occasions, and that it wasn’t a big deal, that using a wheelchair for a special occasion like this wasn’t making a commitment for the rest of my life.

How did it go?

After chatting to a few friends, and browsing museums to find one that hired wheelchairs, I decided to go for it, and on arrival at the Natural History Museum I went to the cloakroom, signed a disclaimer, and 30 seconds later was equipped with a wheelchair. After a bit of figuring out how to fit me, my coat and way too many shopping bags in it, we were go.

I started off being pushed, but the lack of control really bothered me, so I decided I was going to push myself which worked much better (after a few incidents getting around corners anyway!). Whilst my arms were so sore the next day, I think that’s something I’d get used to.

Practically, it was better than I expected. People were on the whole really polite, happy to move out of the way, and no-one I noticed gave me any weird looks or anything. In terms of the museum it was hard going; I couldn’t see quite a lot of the displays, and trying to find lifts was mission impossible.

Overall though, it’s a big thumbs up for the wheelchair. Whilst it is not something I would want (or need) to use every day at this point, for occasions like this, where I’m trying to pack a lot of activities into a few days, it makes things so much easier. It means I can do so much more, without the repercussions of the next few days, and more importantly (for me at least), it means I’m not impacting on others as much.

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Thank you so very much to Caroline for providing todays Saturday Submissions!
Do you relate to how she felt?
If you use a wheelchair, did you find the initial transfer to using the device difficult?

Please leave a comment and let Caroline know what you think, be sure to check out her social media links above and make a new connection! 🙂

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

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

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

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

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

Looking for Guest Bloggers Please!

 

Hi folks,

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

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

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

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

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

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

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

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

 

 

–

Lette 🙂

Saturday Submissions – With Evie from The Zebra Mom

I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.

I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple Guide to EDS on my own blog so now I’m going to write A Simple Guide to Dysautonomia. I hope that this blog will help people to understand the complexity of Dysautonomia; if they are newly diagnosed or want to help their loved ones understand. I have omitted a lot of medical jargon and used easy to understand language so this can also be accessible to young people.

What is Dysautonomia (DIS AUTO NOMIA)?

The Autonomic System is the system in the body responsible for every automatic thing your body does. It is responsible for the way you breathe, the way your heart beats, the way your blood pumps around your body, the way you digest your food and even the way your contractions work in child birth. The Autonomic System is very important.

So, when your Autonomic System doesn’t work correctly this is known as Dysautonomia. Dys simply means “bad”, “ill” or “abnormal”. Dysautonomia is a general term for any condition that disrupts any aspect of the autonomic system.

What causes Dysautonomia?

This is a complicated question. There are many, many reasons why Dysautonomia occurs. It can be the result of other conditions, for example it is believed that Ehlers Danlos Syndrome (AY-LERZ-DAN-LOSS-SIN-DROME) is responsible for Dysautonomia in some patients but that hasn’t been officially confirmed. It can be induced in pregnancy, can be inherited or can occur when the autonomic system has been damaged. Even being deficient in certain vitamins can trigger Dysautonomia.

How does Dysautonomia affect people?

Depending on the type of Dysautonomia you have, the symptoms vary. One of the most common types of Dysautonomia is Postural Orthostatic Tachycardia Syndrome. That’s a mouthful, right? Most people just call it POTS for short.

POTS basically means that when you are in an upright position your heart beats faster than it should (at least 30 beats faster than when a person is lying down or sitting). This can make people feel very ill. POTS can cause people to faint when they’re upright or exercising, they can also get very bad headaches, have chronic fatigue (being tired all the time) or find it difficult to sleep. A big sign of POTS is red or blue coloured skin in the legs and feet when they’re standing or sitting. This shows that their blood is having trouble pumping around their body and is gathering in the legs and feet. This is often the reason why people get dizzy and faint.

Another common type of Dysautonomia is Orthostatic Intolerance (OI).  OI means in the simplest term that your body does not like being upright. Almost like you’re allergic to standing up. Some people with POTS also have OI. The symptoms of OI include palpitations (your heart pounding very hard), light-headedness, chest pain, trouble breathing, nausea, brain fog (trouble thinking or speaking coherently) and fainting.

Exercise, heat, alcohol or even eating a large meal can bring on symptoms of these conditions.

Other types of Dysautonomia include Vasovagal Syncope and Neurocardiogenic Sycope (NCS). These conditions also display similar symptoms.

How is Dysautonomia diagnosed?

If you’re experiencing symptoms of Dysautonomia, the first port of call is to discuss your symptoms with your doctor. Unfortunately, medical professionals fob off quite a lot of people. Patients are told they just need to get more sleep or exercise more.

If you do think you may have Dysautonomia, do suggest the possibility to your doctor. Like any other human, they won’t be able to remember everything they learned in college. You may just see a light bulb going off, and find that your doctor is suddenly able to help. Once a doctor focuses on the possibility, they should take a detailed medical history and perform a careful physical exam.

If your doctor is unwilling to take the possibility of Dysautonomia seriously, consider seeing another doctor. Patients lucky enough to be taken seriously by their family doctors are likely to be referred to a specialist.

The type of specialist you will be referred to usually depend on the predominant symptom they are experiencing. The specialist will then decide on what tests you need and then come up with a plan to help you treat and manage your symptoms.

Can you tell someone has Dysautonomia just by looking at them?

No. Dysautonomia is considered to be an invisible condition. Even though you can’t see it, it still exists. It is a disability and should be treated like any other visible disability. To a trained eye, Dysautonomic signs can be spotted like the pooling in the legs and feet like we discussed earlier.

Can Dysautonomia kill people?

Generally? No. There is a type of Dysautonomia called Multiple System Atrophy (MSA) that is fatal. It has symptoms vey similar to Parkinson’s disease, but has quicker progression. People with MSA are rare and the condition usually occurs in adults over the age of 40. The cause of MSA is unknown, and no cure or treatment slows the disease.

But generally, unless you fainted and hit your head or fell from a height, you won’t die from your symptoms. However, many people have a very poor quality of life due to the severity of their condition.

What treatments are available for people with Dysautonomia?

Luckily, most people can manage their symptoms with prescription medications given by their doctor.  A common medicine known as a vasoconstrictor can stop the heart beating too fast and the blood pressure dropping too low. While these medications can help relieve the symptoms of the heart problems, it does not solve the underlying issue causing Dysautonomia. Sometimes medications can make things worse or cause new symptoms.

Dysautonomia is generally considered a progressive disease, which means it gets worse over time. When the Autonomic Nervous System becomes unregulated it can begin causing damage to the organs. For example, some people suffer from a condition called Gastroparesis (GAS-TRO-PAR-EE-SISS). This causes the stomach and intestines to become paralysed. This means food often sits in the stomach and digestive system for too long. This means that people with the condition can be very ill. Some of them even need to be fed with a tube. This is why early diagnosis is important.

Treating Dysautonomic symptoms can be very tricky because there can be a huge range of symptoms. Some people will have to take different types of medications to treat all the different symptoms.

Luckily, there are some new treatments becoming available but they can be difficult to access, especially in Ireland where there are no Dysautonomia specific specialists or clinics.

I know someone with Dysautonomia who uses a wheelchair. Do all people with Dysautonomia need wheelchairs?

No. Not everyone who suffers from Dysautonomia needs to use a wheelchair. Some people have symptoms so bad that they need to use the wheelchair for their own safety just in case they faint and hurt themselves. Other people use wheelchairs sometimes when they are having a bad day with their symptoms. Some people with Dysautonomia have other conditions like EDS which means they have even more trouble with their body like chronic pain (pain all the time) or they are susceptible to dislocations (their joints pop out of their sockets). They may need the wheelchair to get around.

Some people don’t use wheelchairs at all; they may use a stick or not use anything at all. It varies from person to person.

Can you catch Dysautonomia?

No.  Dysautonomia is not contagious. If you know somebody with Dysautonomia, don’t be afraid, you’re not going to catch anything from him or her. So, if you’re avoiding someone with a type of Dysautonomia, go make friends with him or her.

How can I help someone with Dysautonomia?

Be there to listen if they want to talk about it. Some people are afraid to tell you how they feel because they think friends and family don’t want to hear them complain. Ask them how they are and if you can do anything to help them. Doing shopping or household chores can be a huge help and it would be most appreciated. If you’re friend or family member has Dysautonomia and can’t access appropriate treatment like here in Ireland, write to your local representatives to tell them about Dysautonomia and the lack of care that is available. Help raise awareness in the public by sharing articles or pictures about Dysautonomia. Dysautonomic conditions are incredibly under diagnosed and many of the tests needed to diagnose some of the conditions are not available here in Ireland.

If someone with a type of Dysautonomia that makes them faint collapses in front of you:

– position them on their back. If the person is breathing restore blood flow to the brain by raising their legs above the heart level. Loosen anything they are wearing that might be tight or restrictive. Usually someone with a fainting disorder will come to without any further problems. Give them a glass of water and when they’re ready, help them up slowly. If they are not ready to get up, sit or lie down with them.

It can be embarrassing to faint sometimes so it’s nice to have someone lie down and chat with you to make you feel better. Fainting can be very disorientating and the person may also be sore so let them rest. If you’re worried that they may have broken something or banged their head hard, take them to the hospital or out of hours doctor to get checked out.  If the person does not come to, starts seizing or stops breathing call 999 or 112.-

Well, I hope that I’ve explained Dysautonomia in an accessible way and that it is worthy of a share.
 
You can find more of my blogs on my own website, The Zebra Mom  You can also follow me on Facebook, Twitter, Instagram, Pinterest and Snapchat (evienevin87).

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Thanks so very much to Evie from The Zebra Mom for doing a Saturday Submissions blog for us and a very appropriate post it is too. Do you have any further questions in relation to Dysautonomia for Evie or myself? Please leave a comment below and tell us what you think!

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

All you have to do is tell us a little about yourself and write a blog post in relation to your chronic illness, all welcome!

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

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like 🙂

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

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Updates and Everything Falls In March!

I have been so unwell over the last few months that I have missed and had to reschedule a lot of hospital appointments and now they all seem to have come in March!

I was last admitted to hospital in November last but never got around to writing about it, I was in for a week with another bout of agonizing pain in my right side and gut, all stemming from the Sphincter of Oddi Dysfunction/ Gallbladder pain I had been having all along and that already hospitalised me over 4 times in the one year previously. They took real note of my weight loss this time and started me on new calorie drinks, some new meds, as well as doing some further tests, ultrasounds and abdominal X-Rays all leading up to a second ERCP on the 28th of March, of which I will write about below!

Invacare Action 3 NG – Ocean Blue

Yesterday I had a manual wheelchair assessment with my Occupational Therapist, I have now been measured and fitted for a new manual chair as my current one is loose, rickety and near impossible for himself and myself to push, not to mention that it is far too big for me at a size 18 where I need a size 14 or 15. Yesterday, I was fitted for the new Invacare Action 3NG  (In Ocean Blue!) and have been put on the funding list for it, which means if approved, I will get the chair through the HSE but if not I simply wont get it at all, especially since I was already approved for a new Motorised Wheelchair (Invacare Spectra XTR2 Pictures Below) a few months ago (But is only good for outdoor local use and we do not have a modified car to transport it so I need a manual one to use in the home and transport) There is no guarantee that I will get approval for the manual one, We will just have to wait and see.

Invacare Spectra XTR2

March kicks off with my birthday on the 5th, I have nothing planned only to celebrate with hospital appointments which start on Monday the 6th with a follow up appointment with my doctors who look after my Pots care in UHL. This usually involves looking at the current meds I am on, seeing if they need an update, they ask about my symptoms to date and see if I require another Tilt Table Test or some other tests etc. This will have been my first ‘Pots’ appointment in over a year now so it will be good to catch up and see if any changes are needed.

 

Wednesday of that same week, the 8th, follows with a Urology appointment to check my kidney and bladder function. This Urodynamics Test needs to be done every 6 months or so now that I rely on catheters for painful urinary retention, it can leave you more prone to kidney and bladder infections and kidney dysfunction so that needs to be checked frequently to try and catch infections and Kidney dysfunction as early as possible to prevent any damage.

Image of a Type 1 Arnold-Chiari Malformation. The cerebellum has descended 7mm and there are herniated cerebellar tonsils into the foramen magnum. – Wikipedia

The next day, Thursday the 9th, I have an MRI of my neck and spine, as ordered by my Pain Specialist, to try and rule out Chiari Malformation or other complications because of the severe pain and headaches I am getting coming from around the base of my skull/ top of my neck area, I already get ‘Occipital Nerve Blocks’, for that and ‘Sacroiliac Joint Nerve Blocks’, for the pain I get in my lower back and hips, but I find these nerve blocks are only helpful for a very short period of time (sometimes, if at all!) and are not advised for long term treatment. I have been getting them on and off for over 3 years now altogether as well as continuously taking two types of Opiates (Fast and slow release), meds for neuropathic pain, anti-inflammatories and also muscle relaxants, daily, even with all of these and the injections there has been no proper ‘cure’, especially for the severe neck and head pain, if anything that has gotten worse, so he wanted to investigate that further. We spoke and he explained that he understands that EDSers usually don’t show any evidence of Chiari during a lying down MRI, it is preferred that an upright MRI is performed for a more honest view, however there is no upright MRI in Ireland, one of the closest being in London. I may not need an upright one at all, we will see what the lie down one shows first but he said he would refer me to London if needs be. I will also be returning to London, (privately as none of this is covered by the HSE!) to see another GI specialist that specialises in EDS very soon and I will also see what that specialist suggests I do because the pain and headaches have me bedbound most days now and have worsened my quality of life, where it was very low to begin with! 😦

The following Wednesday the 15th I am back down to Cork University Hospital to see the new private GI specialist I started seeing in November just gone. I won’t mention Names here but, he was recommended to me by a good few people on the Irish EDS related Facebook Pages stating that he is an excellent GI specialist who is very well read up on EDS (Also having studied and worked with the private GI Consultant who specialises in EDS, in London, that I had already heard about (and spoke about in the previous paragraph) and had planned to go and see.) It was recommended that I see him before going straight to London as he can do (in Cork) a lot of the tests they do in London, so I said I would give him a go, and I am so glad I did.

Sphincter of Oddi Placement

I have to say first that My Limerick GI Team in UHL are fantastic in that they have tried almost every test they could to see what is causing all my gut trouble. Since starting all the GI investigations in December 2014, up to now, they found out that I have ‘Gut Dysmotility‘ and ‘Sphincter of Oddi Dysfunction‘,  but beyond medicating and treating me for those, they do not know what is causing my Nausea, Vomiting, Trouble Swallowing and Severe Gut Pain that has hospalised me more than 4 times in the last year, nor do they know why I have lost over 3.5 stone and continue to lose weight even though I am keeping my calorific intake as high as possible on as many days of the week that I physically can. The team have read up on EDS where they have needed to and continue to educate themselves as we continue to investigate (The tests in Limerick are ongoing, even with another ERCP Operation with Bile Duct Sphincterotomy (where they cut the muscle) at the end of this month) but I feel we are still coming to a dead end, Especially when the symptoms have eased only a little and ultimately continue to cause daily trouble and the head GI specialist of the Limerick Team came to me already and said that it would probably be better if I went to London to see what ‘The EDS Experts’ have to say. So on hearing about the GI doctor in CUH who knew his EDS, I made an appointment and went down to see him and get his advice before I decided to go straight to London.

 

The first Cork appointment came in November and I was pleasantly surprised when I met him. He was very well read with regards to EDS, listened to my full medical history, symptoms, complaints, procedures, tests and operations that I already had. Went through the medications I was on and went through some with me that I had never heard of before but he wanted to do a few tests and X-Rays before changing my medications. When he heard I was interested in going to the GI specialist who he trained under over in London, he was delighted to refer me over and suggested that it was a great idea to get his opinion as he would have the most expertise when it came to treating GI trouble in EDS patients and he thinks this London specialist should be able to help me.

He immediately wrote up a referral letter as I was there as well as booking me in for some new tests in Cork hospital that are not available in Limerick. He said these test appointments would be sent to me in the coming weeks after the appointment and sure enough, they did, they came through very fast, a lot faster than I have experienced in Limerick. I had a Barium Swallow X-Ray done in January and still waiting on the results of that which will probably be given during the clinic appointment I have on Wednesday the 15th of March and I am currently waiting on a Gastric Emptying Test appointment which should arrive, I am told, in the next few weeks. Either way I am very impressed with this Cork based GI Specialist who knows his EDS, I will certainly stick with him, as well as the Limerick team, for now while I wait for my London appointment to come through.

Not finished yet! I have a Gynae appointment in the Maternity Hospital on Monday the 20th. Then that Friday the 24th I have an EEG back at the UHL and finally, The Big One! I have another ERCP operation thingy with a Bile Duct Sphincterotomy the following and last Tuesday of the Month, the 28th.

Sphincterotomy – Cutting The Muscle 

 

The ERCP and Sphincterotomy is to treat the severe pain, nausea and vomiting I am having because of what the GI doctors in Limerick think is Sphincter of Oddi Dysfunction. I have written and You can read about SOD and the ERCP procedures HERE.

I have already had the first ERCP procedure where they injected Botox into the SOD and you can read all about how (Kinda bad, though it inevitably worked!) that went HERE.

and that’s it!! That covers all appointments for March only! Every month there is usually something and it feels like, I only get out for doctors appointments these days! but what can you do?! 🙂

Lette xxx

Admitted To Hospital, Possible New Diagnosis

This was me getting ready to go home so I look a lot happier than when I was admitted first!

Oh dear! it happened again!

On Monday the 30th March, I was taken to hospital by ambulance after being bed bound and in severe pain with my gallbladder all over the weekend. I held out as long as I could at home because I knew nothing would be done over the weekend if I went into A&E.
On the Monday, things just got a little too much for me and we had to call for me to be taken in.

I am very disappointed with my GP in all of this. I had gone to him a couple of weeks before this happened, with a renewal script for some very strong pain killers that were prescribed to me when I was last admitted to hospital for the same thing in December. My surgeon had prescribed these opiate based drugs for the pain that helped and were needed. When I went to my GP to renew, he said only Cancer patients get these drugs and that he wouldn’t renew my script even though a higher authority than him prescribed me what I needed!

Then, when my Gallbladder pain started up again last week, we called him about getting referred into the Acute Surgical Unit (ASU) in the University Hospital Limerick, as this was said to me the last time I was in, that if I had more pain, not to go through A&E but to be directly referred in. He didn’t come through on this either. When we rang he gave some excuse about not having my files with him in the surgery he was at (His 3 surgeries computer systems are linked, he should have had all my information in front of him!) and when he called the ASU he couldn’t organise a bed for me so when everything got too much, we just called an Ambulance anyway and I had to go through the A&E system like everyone else. Which is fine but it was unfortunate the GP couldn’t come through. He has been very angry lately when we visit him. He is constantly giving out and very bitter about the HSE (Health Service Executive) and he complains to his already sick patients, This is not just coming from me but from other patients of his that I have spoken to. To be honest I am getting sick of his attitude and shortly I will be transferring to a lovely lady doctor who has come highly recommended!

My hand reacted strangely to the morphine, the IV line was hardly hanging in my vein too so it didn’t last long!

So I was in the A&E about 10 hours, They did a chest XRAY first, then I was being pumped full of morphine through an IV line that was barely hanging on to one of my tiny veins. The doctor in A&E had tried about 5 times to find a vein and by the time I got to the ward the Line had already failed and they had to call another doctor up to fit a new one. He had some trouble and tried about 8 times before he got one and again it was just about in the vein and he said it may only last a few hours. My veins are useless and over the next week, I had three more doctors try about 18 more times to get veins and each line would fail or they just couldn’t get access, eventually during the week they give up on me and give me oral antibiotics when I am able to take them.

Just as I was in my ward Bed and getting ready to sleep, it was about 2am and they called me for an abdominal XRAY. It was over before I knew it, I was back to bed, Injected with something that helped the pain, popped on a drip and I tried to get comfortable enough to sleep.

Not a single wink was had!

It was quiet and all on the ward but I was sore, the surroundings were different, there were beeps and talking in the background and just everything that home wasn’t!

I was uncomfortable and twisted and turned through the night and into the next morning.

The following morning the surgical team came to see me and discuss my case, The same doctor and team that had me in December. He mentioned that he was happy to see me again but not under these circumstances and he felt by looking at me that I had lost weight. They ordered an ultrasound of the gallbladder so that they could compare it to the one from December when I was in then.

At that time my gallbladder was distended and had fluid around it showing infection. It didn’t respond to the fat test and showed it had dysmotility as well as gut dysmotility.

This time the ultrasound came back normal, no sign of infection in it or in my bloods. They mentioned about the possibility of taking out the gallbladder but as it looked healthy with the worry that my EDS may slow or aggravate healing, they were reluctant, as was I!

The head doctor said to give him some time as he wanted to speak with a colleague, the Dean of the Medical School at University Hospital Limerick, who knew surgeons in the UK who deal with rare cases like me. So now the waiting game begins!

I have to say he and his team are excellent. They have a real interest and go to great lengths to diagnose and be careful about removing anything they shouldn’t unless they absolutely have to! They also have an interest in learning more about EDS which is great to see. Unlike some of my other doctors who just don’t seem to care at all.

Gadgety Bed!

Most of the time I was trying to sleep on the very comfy gadgety bed that I could move into all sorts of comfy positions or stoned out of it so all I could do was lie there in a sweaty trance trying to ignore pain and wishing sleep would come to me!
My BP was very low as I hadn’t been eating for many days due to horrible nausea and vomiting so I had missed my regular meds for those days. Over the week, once the nausea was controlled I was taken off the fast and put on a light diet, I could hardly eat anyway but getting a tiny bit of nutrition really helped. I was also able to take my regular meds which helped normalise my BP and I began to feel a little human again.

Mostly pain meds, an antibiotic and meds to raise my BP

On Friday, as it was coming up to the long weekend I was eager to get home, though still in pain and I had no clue as to what they wanted to do with me, I asked what was the possibility of me going home for the weekend? and they said no problem as long as I was prescribed everything I needed! YEAY!!! I was delighted then everything came together! I was visited by some doctors and got some information, finally!

I was seen by a pain specialist, she was going through my pain meds and what I needed to be comfortable at home until they call me into them next week where they can review everything and make a pain management plan going forward.

Later on, I was visited by a UK Surgeon, The Dean of the Medical school. He told me he trained and studied under Prof. Rodney Grahame (The Prof. in London who officially diagnosed my EDS) and highly respected his opinion. I was delighted to speak with him. He was a gentleman and explained to me what he thought was going on.

They as a surgical team discussed my case and came to the conclusion that the gallbladder may have been masking the true pain that could be coming from a thing called the ‘Sphincter of Oddi‘

I know right, WHAT? Never heard of that before, but long story short, there is a little valve thingy under your gallbladder that allows bile though it to add to the pancreatic juices that feed into the digestive system to help you break down and digest your food. This sphincter opens and closes but if you have this dysfunction, it remains clamped shut and cramped and causes a back up of bile and severe abdominal pain. It is most common in people who have already had their Gallbladder taken out, I still have mine so it is a strange one!

There is a test to check for it called 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 as it is way deeper into your system 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.

The cure for it? a series of ops 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 with this so they do it in small stages over time to make it safer.

This procedure however, has never been done in the University Hospital Limerick and it is not licensed here. But they are seeing what they can do for me, if it can be done, I will be the first person they will have done this op on! If they cant license it here, I may have to go to The Matter Hospital in Dublin or even as far as the UK if needs be, however because I am being treated publicly, these procedures if done in the UK will be fully covered by the HSE. This is a huge relief!

So in the mean time, He and the surgical team looking after me are going to sit down with some other doctors in a Multi Disciplinary Meeting where they will discuss my case and how to proceed with it and once they have a plan in place they will call me in for the initial test. I feel kinda special! but I can see why this meeting needs to be done. If I do have this thing, those procedures need to be licensed and I am sure that includes some amount of paperwork!

Going Home!

Happy Camper waiting for the discharge letters!

So for now, I am happy to be home with the furry pup and himself, I am comfortable (enough) on the pain medication and I await my appointment for next week to be called back in to the Pain clinic and then the appointment to be followed up by the surgical team.

For now, I will try to relax and recover, it is hard on this medication as it has some nasty side effects, but if it helps the pain I cant complain! HA! could put that on a T-Shirt!

Anyway, that is all for now, I will update again soon 🙂

Lette (Fainting Goat)

Great News! An Interview With Dr. Mustafa Ahmed, I Need Your Questions!

If you remember a few posts ago, I had mentioned I was looking for people to contribute to the blog by submitting some articles or anything they would like to share. That offer still stands to all of you but I am delighted to announce that on Friday, I was approached and offered an interview with Dr. Mustafa Ahmed, the interventional cardiologist who created The POTS Center.

Mustafa Ahmed MD, is a Cardiologist and Scientist, internationally recognized in areas including valvular and surgical heart disease and POTS. He was born in Nottingham, England, he went to medical school at the Victoria University of Manchester. After graduation he took postgraduate positions at the prestigious Manchester Royal Infirmary, Manchester, then the Queens Medical center, Nottingham. Dr Ahmed then moved to UAB where he was the first ever person selected for the highly competitive Physician Scientist Training Program with specialization in cardiology and interventional cardiology. – myheart.net

We discussed the possibilities of how best to approach this and I thought, why not open the questions up to all of you lot, the community reading this? Then everyone can contribute and have their questions answered by Dr. Ahmed.

If you have a POTS related question that you would like answered please get it to me before Monday the 23rd of March. Feel free to either email me on irishpotsies@gmail.com or leave a comment here or on the other social networks. Facebook, the private Facebook Support Group & Twitter

I am really looking forward to passing all our questions to Dr Ahmed and I thank him for this opportunity to raise more awareness 🙂

Get your questions into me, cant wait to see what you come up with!

Lette 🙂

EDS Awareness Ireland Conference 2014

Here is a little poster I threw together for EDS Awareness Ireland, This will be an amazing conference on March 7th. at the Silver Springs Moran Hotel in Cork. Professor Rodney Graham who is chief medical advisor to the HMSA at the University College London will be joined by Dr. Jane Simmons, Clinical Specialist in HMS and EDS at the Hospital of St. John and Elizabeth as the main speakers with guests speakers from Chronic Pain Ireland, Special Needs Parents Association and Genetic & Rare Disorder Organisation.

Tickets can be found Here.

Below is the first ever EDSAI conference held in Cork in 2012 where Dr. Brian Mulcahy was the main speaker and my better half and I recorded it while there 🙂 This years one looks like the biggest yet, It is going to be awesome and well done to everyone at EDS Awareness Ireland for getting it together 🙂