A little update for you.
This morning I had an early appointment to go visit my GP. My walking and pain have gotten worse, well the pain and discomfort has, the walking hasn’t really been there for a couple of weeks now anyway so, I have been trying to figure out what to do as I have been waiting for nearly 3 years now for a public Rheumatologist appointment in the Limerick Regional. I have been making lots of phone calls to see where I am in the ‘so called’ health system.
When I rang during the week to tell my GP the story with my legs, he said to ring the hospital and see what was going on with that appointment and to explain the urgency for it. Though I had done this numerous of times already throughout the last year, I decided to follow orders and do some more ringing.
It turns out, when I rang the public Rheumatologists secretary. That she did have my name on the waiting list and that they have received at least one letter from my cardio specialist (meant to be 3 letters in total at this stage, since april 2011!) but that I was viewed as a routine patient and not urgent therefore they can not give me a date as to when I might be called.
So as per doctors instructions, I explained my current situation.
“Look, ah, I cant walk… am, im currently being wheeled from room to room on an office chair…”
I actually am, its been my saviour the last too weeks, well, that and my poor hubby having to push and pull me everywhere in it, and jumps to my every whim. I seriously am blessed with this man!
Secretary – “oh, well, am, there’s nothing I can do now, unless you get an updated letter from your GP stating the urgency and that it is an emergency case…”
So after some questioning about certain letters, that look as though they may never have been sent for me to get an appointment in the first place, I return to my own GP on a last minute, early appointment so that I wouldn’t miss work this morning.
We arrive at the doctors house, Keith runs in to say we are here and he invites us in. Keith runs hack out to the car to help life me in.
…all manor of uncomfortable noises, grunts, stumbles and various levels of retardation on my part and I am finally on the doctors exam bed, thingy!
In walks the doctor and what starts to be nearly an hour where we discuss my options going forward for treatment and how the HSE has failed patients like us and doctors like my GP.
Our closest place for treatment, like proper, recognised treatment for dysautonomia and EDS especially, is over in London. There are no specialists of the condition currently anywhere in Ireland. There are a few doctors, specialists, physios and orthos over here who have a general interest in it, but no specialist qualification for treatment over here at all. This is an ongoing battle, we as patients are struggling through just to get the treatment we need.
He mentioned to me after a range of motion test on my legs, that a wheelchair may be in order to help with my loss of mobility. This condition can be progressive, especially without proper treatment and I have been on and off crutches for the past few years now due to increasing joint strains and pain in my legs.
and this is where we are!
I have done my research in trying to understand the procedure to get a wheelchair via the medical card or medical insurance, seriously long winded! I have sent a ton of emails for information on chairs so all I have to do now is wait to be assessed for the chair, and sure, I dunno how long more I could be waiting for that for! I’ll just have to wait and hope for the best.
I wouldn’t have used a wheelchair for long term use before, only for short term use, I am not sure how I feel about it yet to be honest, right now I just want some mobility back! Any and all advice would be greatly appreciated in that department. Thank you and i’ll keep you posted on what is happening. 🙂
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Irish Dysautonomia Awareness 