Well I'm back! I know, I know. I'm about a year and a half overdue for an update. SO I thought I'd try my hardest to bring you up to date with what's been going on recently.
Last time I wrote, I'd just been given my official diagnosis of Ehlers-Danlos Syndrome- Hypermobility Type, although from the sounds of the recent EDS symposium and learning conference, it sounds like it won't be called that much longer! It's been a rollercoaster ride since then! I've completed over half of my degree, including my first block placement (yay!). I went on a trip to France to surprise my host sister and my mum! I've restarted seeing my pain specialist, I now have a cardiologist and am waiting to see a gastroenterologist (more on that later). I've had 3 different jobs and now have a great and flexible job, I wear ankle braces full time, see a podiatrist for orthotics and have had more life experiences than I can count! I've been living.
It's been busy for sure!
As I mentioned I restarted seeing my pain specialist from 4 years ago. She was the one that noticed that I was simply surviving, not living. So I've been trying my very best to live, to have a social life, to work, to go on dates and to have fun. To experience the good, the bad and the ugly (pain).
A lot has changed in a year and a half. Most of the change has actually been within the past 6 months, which has been a steep learning curve for me.
When I was diagnosed I wasn't on any medication, including pain medication as nothing seemed to be working. SO... my pain specialist tried me on a couple of different things and I think maybe I've got a semi good thing going. True my pain isn't gone, it's not even tolerable a lot of the time, but I get more sleep (cause I'm being drugged) and between my GP, pain specialist and I, we've got a combination of 4 different drugs to try and reduce the pain. Plus voltaren gel and all the usual things like TENS, heat, ice and massage. I'm willing to try anything.
Apart from pain meds, I'm now on meds to stop me fainting, for my stomach, my immune system and for my B12 deficiency. Woo! Living the life. A nice cocktail of over 10 different kinds of meds a day is keeping me going. I used to be bitter towards meds, as nothing really worked, therefore I was anti being drugged up to my eye balls. Well now I am and I am grateful for it. If I wasn't drugged then I wouldn't be able to sleep, function or be conscious.
Now to the less obvious stuff. In January of this year I dislocated my shoulder and took Tramadol. Biggest mistake!! This resulted in being barely conscious, not able to sit up without throwing up and passing out, tachycardia, all sorts of fun heart stuff and an ambulance ride. After that it was decided that I should see a cardiologist.
After a lot of testing and being told we'd try conservative treatment first, I ended up back in his office not even 2 weeks after my first appointment, fainting every 3 days. So now I'm on 2 different meds and have only fainting once in 2 months! Yay! Plus I've been officially diagnosed with Dysautonomia, with features of Inappropriate Sinus Tachycardia, Vasovagal syndrome and Postural Orthostatic Tachycardia Syndrome. Although it's looking more like POTS than anything else. Win!! I am so happy that I've finally been listened to!
That's not everything but it's a lot. It's hard to sum up a year and a halves worth of life but hopefully I'll be able to fill in all the gaps over the coming months.
BB
It's been busy for sure!As I mentioned I restarted seeing my pain specialist from 4 years ago. She was the one that noticed that I was simply surviving, not living. So I've been trying my very best to live, to have a social life, to work, to go on dates and to have fun. To experience the good, the bad and the ugly (pain).
A lot has changed in a year and a half. Most of the change has actually been within the past 6 months, which has been a steep learning curve for me.
When I was diagnosed I wasn't on any medication, including pain medication as nothing seemed to be working. SO... my pain specialist tried me on a couple of different things and I think maybe I've got a semi good thing going. True my pain isn't gone, it's not even tolerable a lot of the time, but I get more sleep (cause I'm being drugged) and between my GP, pain specialist and I, we've got a combination of 4 different drugs to try and reduce the pain. Plus voltaren gel and all the usual things like TENS, heat, ice and massage. I'm willing to try anything.
Apart from pain meds, I'm now on meds to stop me fainting, for my stomach, my immune system and for my B12 deficiency. Woo! Living the life. A nice cocktail of over 10 different kinds of meds a day is keeping me going. I used to be bitter towards meds, as nothing really worked, therefore I was anti being drugged up to my eye balls. Well now I am and I am grateful for it. If I wasn't drugged then I wouldn't be able to sleep, function or be conscious.
Now to the less obvious stuff. In January of this year I dislocated my shoulder and took Tramadol. Biggest mistake!! This resulted in being barely conscious, not able to sit up without throwing up and passing out, tachycardia, all sorts of fun heart stuff and an ambulance ride. After that it was decided that I should see a cardiologist.
After a lot of testing and being told we'd try conservative treatment first, I ended up back in his office not even 2 weeks after my first appointment, fainting every 3 days. So now I'm on 2 different meds and have only fainting once in 2 months! Yay! Plus I've been officially diagnosed with Dysautonomia, with features of Inappropriate Sinus Tachycardia, Vasovagal syndrome and Postural Orthostatic Tachycardia Syndrome. Although it's looking more like POTS than anything else. Win!! I am so happy that I've finally been listened to!That's not everything but it's a lot. It's hard to sum up a year and a halves worth of life but hopefully I'll be able to fill in all the gaps over the coming months.
BB
Comments
Post a Comment