Wheelchair on the way

The Quickie Helium

No, not that one… well not straight away anyway!! 🙂 😉

After the Doctors appointment early Wednesday morning, many phone calls followed in how to go about getting a wheelchair for mobility. And in a short few hours, a lot of new information and opportunities did arise!

While Keith took the ‘Very Urgent Letter’ that the Dr wrote for the specialist, into the secretary yesterday, I got to making some calls. Firstly I emailed a few places that I found online, firstly Assist Ireland, and through that site, this Link in particular, I found out how to go about getting a wheelchair through the HSE or otherwise.

I had to firstly ring my local health center and explain my situation. They put me through to their trusted Occupational therapist who will come to my house next Friday (13th) and asses me and my house for what I may currently need to help mobility.

She was very good on the phone, listened carefully as I told my story, was very sympathetic, took rough weight and height measurements so that she can bring an ‘out of the box’ chair to me next week just so I can get out of this office chair and have a tiny bit of freedom to leave the house if I need to. I am currently confined to the upstairs and cabin fever is setting in, real quick!!

Also, MMS medical in Cork returned my email about a beautiful Quickey Revolution wheelchair I had spotted on the assist ireland page and I got a buzz from a lovely guy called Rory who gave me lots of info and mentioned the Quickey Helium to me as the lightest wheelchair, it is beautiful but I bet way out of the price range. They will give me an assessment for that and some other chairs next Monday week and between them, the HSE and my VHI it is looking like for a small amount I have to pay first, then I should be covered for a fully customed chair to fit my exact needs which is really really cool if it works out. They come in lots of colourdy colours which if I must have a wheelchair at least I can speck it out and make it look funky! 😀

So for the moment, that’s the story. Next Friday is my first assessment and my first chair just to get me going. Then there will be assessments for a customed chair going forward if I even need to go that far and if I can successfully do it between the HSE and the VHI,  now that Keith handed the updated urgent letter straight to the relevant secretary, she said she would pass it on immediately so hopefully, just hopefully I will be called and get some proper treatment towards the EDS soon.

Lets take bets on how long that will take, shall we?? 😉

Before I go I want to thank Leigh Gath, Author of the great book “Don’t Tell Me I Cant”, and friend of mine, for all the info and help she has offered, you have been amazing!!

There are loads of others who have helped me with information, some peeps over on the EDS Awareness Ireland page, ye all know who ye are, and ye rock!

…and I will forever thank Keith, Thank you, I love you, you are the most patient man on the planet! ♥♥♥

New Wheels for Wonky Joints!

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. 🙂

Thank you for continuing to read if you are still doing so. Please note I always welcome guest posts, etc. so if you have anything you would like to post, blog, or even share over on our Facebook or Twitter, please feel free 🙂

 

 

 

Limbo Legs!

Firstly I would like to thank EDS Awareness Ireland for sharing my diagnosis story, over on their page this week as part of their awareness raising drive. I appreciate any awareness, especially of the lack of proper support in this country for care or any awareness of the condition itself is always welcome. These folks do a great job 🙂

So, Limbo Legs? Sounds like a funky dance right? Well, You could say that! :p

Lately, has been strange…

I currently cant walk independently… or, at all in fact. Even when I use crutches, all my weight is in my arms and I soon lose strength to hold myself up and the legs just crumple from under me.

There has been many a time before where my legs have been less than co-operative but I have managed to, ‘walk it out’ or recover to some degree where I get back to what you would consider normal. This feels different.

There is sharp deep pain in the joints, especially the right hip, knee and ankle. This leg was first to give me trouble. Then my left leg started to give trouble because I was over compensating with it to take pressure off the other leg!! In the end the pain became such that, when I stand, my joints crumple under my weight, *Fat Bitch! LOL! Ah no, seriously, it kinda strange not being able to stand up. It makes you miss it almost immediately!

Thankfully work is keeping me busy and distracted, I am still enjoying it, which is the main thing and it is something that I enjoy concentrating on. It keeps me from getting pissed off at the fact that I always have to ask for help with stuff and getting around.

Wednesday morning I have a doctors appointment to assess the situation further. I made a few phone calls to the rheumatologists secretaries in both hospitals. The public one and the private one. They both had me down as being, ‘routine’ on the public waiting list since April 2011 and could not give me a date, not even a guess as to when I might be called.

I simply cant afford to go private and I can only do so much as a public patient. I will see what the doc says Wednesday morning and go from there. When I rang the rheumatologists secretary, she told me to get an updated ‘urgent’ letter from my GP and to send it in. Only then will they be able to check my files and see if I am suitable to give an expedited appointment to!

Until then, I will stay seated in my office chair, where i can be wheeled from room to room!

it works, bitches! :p 😀