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

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

Absent

Sorry I've been so absent recently. I've had loads of exams this week and I've been quite stressed and not super healthy. I don't think my body has been coping very well with all the stress and I've had some GI flare ups and joint issues these past couple of days. On Saturday night I went to a party and I paid for my choices the next day as I couldn't walk without my crutches. I do through phases where I am almost jumping off the walls and feeling amazing and the next day I can't walk. Boom and Bust. I've never been very good at managing the boom and bust and stress cycle. I guess I haven't really mastered the art of pacing quite yet. I also did something quite stupid in my semi-drunken state on Saturday. I told some of my friends what I'd been going through. Usually I would never say anything and I wish that I could take it back, but I can't. I guess in that moment I just felt safe. Now don't get me wrong, I didn't tell them everythi...
Post a Comment
Read more

The wrath of medication forgetfulness

I'm really feeling the effects of my stupid forgetful brain this morning. I didn't realise how much my medication helps (because sometimes it doesn't feel like it does anything) until I forgot to take it last night. I have to admit, it probably wouldn't have been a great combination with the alcohol that was probably still in my system when I went to bed, but still, I'm really feeling the effects this morning. The bad part, my rescue medication has some seriously horrible side effects so I probably won't be taking that any time soon. I guess I deserve the pain I'm in this morning, after all I did drink and then forget to take my medication before I went to bed last night, over estimating my pain management skills I think. Now even the sound of my computer keys tapping is sending my brain into sensory overload and I have no idea how I'm going to get all my assignments done today. I deserve this, but still I feel sorry for myself. The feeling of waking u...
Post a Comment
Read more