David Bowie Tribute Gig

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Thanks to John Steele and all involved for organising this years David Bowie Tribute Gig as a fundraising gig for both myself and Zondra Meaney (She is also from Limerick and also has Dysautonomia, EDS, and many serious secondary conditions) with all proceeds going towards each of our respectful Medical Funds.

It is on Friday the 10th of February in Dolans Wearhouse Limerick. Tickets are only €10 and can be purchased HERE, Last year this Bowie Gig sold out fast so be sure to get your Tickets early!

It has an excellent line up of local talent including: Falldogs, Shardbourne, Eammon Hehir, Parliament Square, Theme Tune Boy, Siobhan O’Brien, Ronan Mitchell (Foxjaw) The Alvin Purple Experience and The Brad Pitt Light Orchestra, to name just a few!

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To raise extra funds there are also beautiful posters designed by Ken Coleman especially for this night, They are size A3 on a matt card finish at a price of €20 each, there are only 50 made and a lot of them have been taken already so to be in with a chance to get yours put your name down HERE asap.

If you cant make the night but would perhaps like to find out more or donate to the funds separately you can do so at the links below:

Lette Moloney’s Go Fund Me

Zondra Meaney’s Go Fund Me

Alternatively, sharing this blog post to your friends would be hugely appreciated.

Thank you all and again to all involved,

Lette 🙂

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Latest Fund Update – Jan 2016

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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 🙂

This time in Hospital, Seizures!

It was Friday morning and all through the house, not a creature was stirring… except for my husband, Keith and my sister, Jessica frantically calling out my name trying to wake me out of a syncope that had just happened after I got onto the floor to play with our pup Boo who now found herself up on my chest trying to worriedly figure out what the hell was happening to her mom.

There is a video, but I wont traumatise you… unless you want to that is, if so, let me know and I will share the video of my husband giving me rescue breaths while I fail to breath while out cold. It’s not a pretty site, I assure you.

I hadn’t come too, Keith called an ambulance and continued to give me rescue breaths for a further 17 minutes until they arrived.

All hell broke loose on the landing of the stairs while they proded and poked me with IV lines, Blood Pressure monitors, temperature readings and heart rate monitors and as I wasn’t breathing very well they decided to intubate me into my nose which immediately sent me into a full blown seizure, just to add to the mix for good measure!

This is what I am told of the day, as of the moment I passed out on the landing while petting Boo, I don’t recall a single sausage!

I was rushed to hospital in a state of Status Epilepticus while they tried to stabilise me and filled me full of every sedative probably known to man while I promptly and apparently completely ignored them and kept up the shake and vac, just to spite them!

Keith bagged up everything I needed, along with Jessica and Boo into the car, dropped them at my parents house and rushed into the hospital to be with me where I was in re-suss continuing to seize, even while doped up to the eyeballs and completely out of it.

A CT and full set of bloods was ordered and subsequently came back clear, yet I was still seizing and in and out of consciousness and while conscious, I apparantly kept looking around myself in utter awe and repeatedly asked, “Where is this place?!”… What an idiot, LOL! but in my own defense I was completely wrecked at the time and on all manner of wonderful drugs!

I was in the hospital for roughly 13hours before I started to make any manner of mental sense. This had them worried in that all day I was acting completely confused and not at all myself. They hadn’t been sure up to this point whether it was the drugs or if I had very seriously suffered some sort of oxygen deprivation to the brain.

Eventually I started to come round, still a little confused but as Keith explained everything that had happened, it was like all emotion suddenly connected with his words and I started to cry, a little in confusion and a little in the guilt I felt in all the bother I had caused everyone, especially Keith and my family. A completely irrational feeling but I couldn’t help it.

They admitted me and Keith decided to head home for a rest. The next day, Saturday, I don’t remember much of either as I mostly slept and puked and had a few more seizures, just to keep them on their toes!

Sunday is the first day I truly remember and I felt absolutely dreadful. My muscles were stiff and sore from seizing and I kept getting ill because of all the medication in my system and I had one hell of a headache and very low blood pressure.

I was in hospital after this for 2 weeks where I recieved just one more diagnostic test in all that time, an EEG. They were testing me for Epilepsy.

The EEG came back clear also but the Neurologist (now my newest addition to my team of doctors) informed me that he had seen people with epilepsy going through years of EEG’s before being able to catch the electrical activity in the brain so that they were going to start treating me for it anyway, and would continue testing as an outpatient, as I was continuing to have seizures and signs of the condition, like waking up with bites on the inside of my cheek and blood on my pillow. He said I had all the hallmark signs of it and so he started me on the new drug Keppra and sent me home on exactly the 14th day of my stay in hospital. I was delighted to be going home.

He told me to prepare for tiredness but boy, that was an understatement! The addition of this drug to the rest of my medications make my total daily tablet intake number 22 and has completely knocked me for six. The quality of my life is currently down due to the amount I need to rest and how ill I feel, especially after a seizure but hopefully once I get used to the new med in my system, I will be back on the right direction again.

The Keppra seems to be working also, any seizures I have had since coming home have been very mild and nowhere near as intense as they had been while I was in the hospital which is surely a good thing.

So now as well as Dysautonomia, Pots and EDS, I am now being treated for Epilepsy too.

I tell you one thing, I have an extreme new found respect for anyone who has lifelong Epilepsy, seizures really knock the crap out of you!

So where I stand am, now is that I have a lot of tests left to do, as an outpatient. Why they couldn’t do these as an inpatient ever yet boggles the mind, but there you have it. My hormones are so out of whack I may infact have a pituitary gland adenoma but no MRI was requested… this will be done as an out patient, if needed.

I have to have more EEG’s done as well as some Video EEG’s but they dont do them in Limerick, instead I will have to wait to be called to Cork or Galway, again as an outpatient.
Bloods, as an outpatient,

Urine, as an outpatient,

Life, The Universe, Everything, Outpatient!

Deboned, grated and put on a pizza, Outpatient!

Le sigh… but at least I am home and on the mend.

Also, because of these ongoing delays in my treatment (and in some cases the complete lack thereof) I have decided to set up a medical fund to help me get to London to Prof. Rodney Grahame and Prof. Mathias’ clinic who are specialists in Dysautonomia and it’s related conditions.

The treatment fund has been going amazingly well and the support has been amazing, I cant thank everyone enough for their contributions so far, once I reach the €5000 mark, I should be able to make my first trip over to get the ball in motion with my treatment.

That is all the news I have for now, I just wanted to update all that had happened while I was in hospital and there you have it! Hope you are all well 🙂 🙂 – The Fainting Goat 🙂