Skip to main content

One week until the geneticst

As I've mentioned before on here, I have never been formally diagnosed with Ehlers-Dalos Syndrome. Where I live, you must be diagnosed my a geneticist, whom it can take anywhere from 6 months to 2 years to get an appointment with. My appointment is one week today. The 15th of January.

I'm not sure if I ever gave a proper back story on here about my medical history and I can't be bothered to read back through all my posts so I thought I'd share a short version now:

  • I was born with hip dysplasia
  • I've suffered from pain throughout my whole body for as long as I can remember
  • I've always been able to impress my friends with my 'party trick' joints
  • I had 2 breaks in a year, which took 6 months to heal. One of which is still healing
  • I suffer from other non-musucloskeletal issues such as GI issues, vestibular issues and heart issues 
This is a VERY short version but it gives you a bit of an idea. 

To be honest, as I have said before, I'm more scared that he won't give me the diagnosis of EDS because then I will still have no idea as to what is wrong with me and no one currently takes me seriously. So next weeks appointment is very important. And it is therefore important that I take all my information and symptoms along so I can get properly diagnosed. 

On monday, I have my first physio appointment of the new year, consisting of 45 minutes of group physio pilates and then 30 minutes of 1 on 1 physio. In this time, my physio and I will be going over the letter that she has (hopefully) written for me to take to the geneticist, which will help to prove I have EDS. I'd probably scream if she hasn't written the letter but she promised so hopefully!

It is a very important day for me and I'm not entirely sure how I will react, however I know what whatever happens, I will be supported. If I don't get the diagnosis, I will probably have to travel to another state to get diagnosed, so I'm really hoping and praying that I can get it next week!


BB :)
Labels:

Comments

Post a Comment

Popular posts from this blog

Darkness

Darkness. For a long time that's what I lived with day in and day out. At 16 it's hard to hear that the rest of your life will be filled with pain and suffering, that no one can fix you. I had friends, friends that didn't understand what I was going through, so I retreated and so did they. I can honestly say that I've never considered myself to live with depression, but this time was probably the closest I've ever come to it. I felt like I was stuck in a dark hole that I couldn't get out of. Even worse, I felt like no one even knew I was there. I was the happy girl, the smiley one, the 'I'm okay' one, the one you would never have guessed lives with chronic pain. And I still am. I still am all those things and yet more. I think when you first get given a life changing diagnosis you go through many stages until you get to acceptance, one of them often being feeling isolated and alone. And that's what I felt. I didn't know anyone in my situa...
Post a Comment
Read more

Finally! Thank you!

So I found this link talking about chronic pain, especially in the Australian population. It is so true! I myself have found that APMA is a very useful organisation and finally it's being recognised! http://www.abc.net.au/news/2014-06-20/queenslanders-on-frontline-of-fight-against/5540410 Have a watch! It's amazing :) Good reason to smile today. Lets get some awareness going! BB :)
Post a Comment
Read more

Turquoise for Dysautonomia Awareness Month

Again it's been a month since I posted... Opps! It's been an intense month! My endoscopy went well. They were worried about an anaphylactic reaction to the Propofol but luckily that didn't happen. Sadly though they didn't find anything so still no answers but I've got my gastro appointment in about 3 weeks so hopefully we'll have a plan to move forward then. I also managed to have a POTS flare after the procedure due to the 'eating and drinking nothing for 18 hours' thing. But after fluids and the threat of an admission I went home to snuggle up with Ami. Next in September was an anaphylactic reaction to peanuts, uni problems and a possible CRPS diagnosis, amongst others. Let's just focus on the possible CRPS diagnosis. As you may or may not know, I fractured my right ankle in 2014, followed by 13 weeks in a boot and crutches + 4 months of rehab, plus rehab that continues to this day. My ankle has since never be the same, but usually it...
Post a Comment
Read more