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!! πŸ˜‰

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! πŸ™‚

Please let me know below, Thank you πŸ™‚

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 πŸ™‚

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 πŸ™‚

Hope you are all well? πŸ™‚

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