Blog Awards Ireland Long List Nominee!

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

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

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

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

Thank you to everyone who put this blog forward, I greatly appreciate it <3 <3 <3

Stay posted to see if we actually get anywhere! ;)

Fainting Goat (Lette)

A Year Today!

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

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

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

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

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

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

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

Thank you,
Fainting Goat (Lette)

Admitted after the ERCP – Possible Bowel Pacemaker!

Things never just go straight forward, do they? Nope! and of course, this time was no exception!

In I went to the UHL on Tuesday the 21st at midday, all prepared for my ERCP procedure to be done and so I could be kicked back home that evening to recover, however, little did we realise just how long it would actually take!

They popped me on a trolly as soon as I arrived as I had been dizzy all morning and they didn’t want a risk of me fainting and deemed it best that I wait in as comfortable a position as possible as I could be waiting around for a few hours.

I said my goodbyes to Keith and the nurses told us to expect to be in until at least after 5pm. Keith went home and I lay on the trolly waiting for things to start happening. There wasn’t even signal in this particular part of the hospital for my phone so I had no internet, texting or anything to distract myself!

All was well until they needed to take some blood from me and wanted to insert an IV line. This is when all the fun started!

3 nurses tried and failed, 2 lads from the Cath Lab tried on not only my hands and arms but also on my feet (Very uncomfortable to say the least!) and failed, One of the theater consultants came out from doing an operation to take a look at my veins, checked them over and said, “Nope! I will hand it over to Dr. Moloney!” (referring to the consultant who would be doing my procedure in theater)

Finally at about 6pm, Dr. Moloney comes out of theater to take a look at my veins and decides, “We don’t need bloods anyway, not to worry about it and I will pop an IV in, in theater before the procedure”
So that ended the long wait around waiting for someone to be able to find a vein, now it was time to actually get this done! The nurse helped me into a very sexy blue paper theater outfit and pushed me into theater where there were 2 nurses, the first tall doctor who had earlier come out to check my veins and said ‘Nope!” and the good doctor himself who actually successfully found IV access after a few attempts, Excellent, time for sedation… am, about that…!

I have a sensitivity to Benzodiazepines, having ended up in ICU last year after being treated with them for seizures I started having in May 2014. It turned out the first seizure was caused by a complete once off event of a lack of oxygen to the brain after a Vasovagal Syncope where I had stopped breathing. The Ambulance staff immediately treated me with Benzos, the standard treatment to stop seizures, not realizing that the more Benzos they treated me with the worse my seizures got. I was treated for these seizures over the course of about 3 months with these drugs until such time as I ended up in the ICU before realising that it was the Benzos causing all the trouble.

Thing is, Benzos are used as sedatives in minor surgeries and procedures too, which was meant for this ERCP, so the Dr. decided to sedate me through the IV with something else they had, that would make me feel a little drunk, but I was still wide awake and feeling everything!

They sprayed the back of my throat with something nasty tasting to numb it and popped a round yellow thing in my mouth, between my teeth to keep my mouth open so that the endoscope could easily pass through. My eyes watered as the scope went down my throat, into the stomach and pushed through the duodenum.

I kicked out and squirmed in intense pain as soon as this happened. I gave the doctors and nurses a good fright too as they were under the impression that I was sedated!

The Dr. looks down at me,
“You’re still with me, yeah?”

I look directly at him while gripping my right side in pain and I nod quickly!

He looks at the nurses and said
“Ok, no cutting today, lets just do the Botox Injection to numb the site, make it quick!”

He tells the other doctor to give me extra pain relief and sedative as he quickly tries to inject the site. I feel the sharp pinches of the needle, they are completely bearable compared to the pressure and pain I feel because I presume of wherever the scope is after leaning.

The procedure is done quickly, I am given more pain relief and feel the earlier sedative continue to tingle the back of my skull but the pain is still there as I am wheeled into the recovery area to be monitored.

The Doctor comes out to check on me and says that if the pain continues I will have to be admitted. I am watched for a couple of hours where I begin to spike a temperature, a reg doctor is called for me, I am put on IV fluids and painkillers and am admitted to a ward by 8:30pm.

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In the confusion of trying to get me settled into the ward, make sure that I am properly assessed and medicated, the transfer of my regular meds list (Daily meds for Pots and EDS pain, some of which I cant just suddenly stop) to the nurses on the ward went a little askew and would come back to haunt me in the next few days, but ill get to that in a minute!

After many uncomfortable, sweaty, loud and painful hours they finally found a concoction of meds and opiates that got on top of my pain enough for me to want to rest for the night without feeling the need to moan loudly and annoy others in the room. I didn’t sleep, even with a sleeping tablet and much morphine but I really needed the rest.

I ended up staying in hospital over the course of a full week, in lots of pain and having major trouble with my Gastroparesis because of the opiates I was on. They wanted to keep an eye on my bloods and me to make sure nothing dangerous happened during the ERCP, incase I may have an infection or something as I was spiking temperatures on some days but thankfully this was not the case, I was just in a lot of pain.

On one day, I requested pain meds in plenty of time as I felt pain coming on only for the nurses to have been busy and left me without for a couple of hours. I ended up fainting after returning to my bed from the bathroom and I frightened the other ladies on the ward!

It turned out that when they initially admitted me to the ward my regular meds list got taken down wrong and they hadn’t been giving me my full regimen of meds that I normally take so my bp was all over the place and on the day I was due to be released my HR went up to 163bpm but settled again later with rest.

Prior to letting me go my Gastro surgeon came to talk with me and went through my meds and everything I would need going forward to help with pain and the Gastroparesis difficulties.

It looks as though things are getting worse in that department. I am losing weight, having difficulty eating anything without severe pain, bloating, nausea and vomiting and he mentioned the possible need for a Pacemaker in the bowel in the not too distant future to help with the ‘slow’ and sometimes ‘non existent’ transit in my gut, of which he wants to discuss further on my next appointment with him which is the 15th of Sept.

I was let go home a week after being admitted on raised pain meds and antiemetics with orders to take it slow and steady until they see me next month. I have been very sore and very sick. Pretty much bed bound nearly every day since being released and have even had a small seizure for the first time in over a year but I am able to keep the bright side out. Even lying in bed there are things to watch and I am eternally grateful for my wonderful husband who provides all of my supports.

So for now I am recovering slowly, I will see the specialist again next month and until then, I will keep you all updated with things as much as I am physically able :) Ideally I need to get back over to London where they are specialised in those with EDS, to meet a neurogastroenterologist however, I need to get better before being able to travel once again, can you believe it has been a whole year this month since I first went to London for treatment? that story can be read here :)

Please remember, I am most easily able to keep the Facebook and Twitter pages up to date most frequently so be sure to check us out over there too for almost daily updates and thank you for following this humble bloggy! :)

ERCP In The Morning!

It is happening!

I got the appointment for the ERCP on my ‘Sphincter of Oddi Dysfunction’ (SOD) a few weeks ago and confirmed the date for tomorrow, the 21st July in UHL.

I rang this morning to confirm everything was going ahead and I was told that because of a few emergencies that have to happen first, I may not be called at all so I was left waiting until after 4pm today to see if I would in fact be called for the procedure!

I was irked to say the least as I have been admitted to hospital twice since December for the pain and have been in constant pain since last being left home in April. The pain has also increased in the last couple of weeks and has gotten pretty bad the closer I got to this appointment. I think the pain meds I am on are losing their strength and the pain in the last few days especially has been bad enough for us to consider going to A&E, but I held off from going in knowing this appointment was coming.

It turned out that at about 3:30pm, I got a call back from the hospital and was told I was on the list for the afternoon and I have been called in so… yeah! It’s happening!

Until I speak with the surgical team tomorrow I am unsure if I will be staying in or not, but apparently this is only the first of a few ERCP’s on the SOD I need to have done. I was told that to weaken the muscle they would need to repeat the procedure a few times, but I know nothing else about what may happen or how often they need to do it, dates, recovery time, illness in between, anything! Which is currently preventing me from making plans to get back to London for further treatment. Until the pain is eased enough for me to travel (and I have been too unwell to travel since last December) and the procedures need to be out of the way but as soon as I see a clear path I will be making plans once again.

So in I go at midday, will hang around for a couple of hours I am sure, then will have the op, I will be knocked out for the procedure and it should be straight forward enough… have I ever been straight forward though?! They should monitor me for about an hour after to make sure all is OK and will then either admit me or send me home, no idea!

Either way, I will fill you in after the event!! ;)

Youtube Live Chat (Just an Idea!)

Hi folks,

This is only a seed of a thought at the minute, but I was wondering…

If I were to do maybe a monthly live Youtube chat, where I answer all your questions after researching proper answers and I will provide links and references for further reading etc. Or perhaps have guests on in relation to Dysautonomia and EDS etc. if I can find them, would you watch it?

How it works is,

  • I provide a date and time that suits the masses using a blog post or Facebook Event Page.
  • You post questions into the post for me (Or possible guest) to research to give you the best possible sourced answer I can. (I won’t accept made up or woo-woo answers, my peeps only get the best!)
  • I research all the answers to the questions and on the live chat date I will present them while possibly sharing my desktop screen.
  • You get your sourced answers and I learn also along the way, not to mention you might get to watch my ugly mug on the video too! :p
  • There is a live typed chat that people can take part in during the live feed and I will do my best to involve and interact with everyone.

That’s the idea… Do you think you would watch and take part in something like that? I would like to be sure I would have viewers before I put the effort in! :)

Please let me know below, Thank you :)

Extensive Dysautonomia Links

I am working on a couple of blogs at the moment including a review of my power wheelchair but that is being reviewed by the Occupational Therapist and the Wheelchair Rep. Next week so I will wait till after that to review it properly as many things on the chair need to be adjusted.

I am also working on a blog about how weather and air pressure affects people with Dysautonomia but I want to do a bit further research before I post it.

So, in the mean time, I thought I would share THIS!

An amazingly extensive list of Dysautonomia links over on the DINET Site. It includes links about dysautonomia and:

Anaesthesia
Baroreflex
Catecholamines
Chiari malformation/spinal cord involvementChronic fatigue syndrome
Dental Considerations
Diabetes and autonomic neuropathy
Disability
Ehlers-Danlos Syndrome (Joint Hypermobility Syndrome)
Exercise
Fainting
Fibromyalgia
Hormones
Hypovolemia
Lipodystrophy
Magnesium
Medications/Treatments
Mitochondrial disease and dysautonomia
Mitral valve prolapse
Multiple system atrophy/shy-drager syndrome
Norepinephrine transporter
The Nutcracker phenomenon
Outlook
Orthostatic hypotension
Paraneoplastic syndromes
Pheochromocytoma
Porphyria
Postural orthostatic tachycardia syndrome/orthostatic intolerance
Pregnancy
Research Studies
Support
Syringomyelia
Tests
and… Videos!

Be sure to check it out HERE and check out their main pages too, it is an excellent site and resource of information :)

Please Add Your Blog To Our Blogroll!

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Are you a blogger?
Is your blog relating to chronic illness or health & lifestyle? Would you like to have your blog added to our blog roll on the right of this page?

YEAH?!!

Then leave a brief description and a link to your bloggy in the comments below and ill get adding :)

Hope you are all well? :)

Lette