Hey! Sorry for being MIA the past couple of days, things have been pretty hectic. Had a nice time with my girlfriends on Saturday, however I was so not ready to do my first shift in forever on Sunday. On the plus side, my cousin got engaged so there's going to be a wedding! I'm so happy :) Was very sore after work. Not just my hips and back, but everywhere, so I think my body just needs to get back into it and it'll be fine. Then yesterday I started my Winter Intensive uni course in the morning. But exciting news!! Which happens to relate to the day 22 question!
Whilst on my break I got a call from a mystery number. Turns out it was this really important/recommended specialist offering me an appointment that afternoon. I had been on the cancellation list with an appointment booked in for September. Basically this guy is very hard to get into, so I was seriously seriously excited to get this call. This guy has come highly recommended at getting to the bottom of random, unidentifiable chronic illnesses i.e. ME! So I quickly called my mum and off we went.
He was... random. I expected a weird, slightly ASD guy as he has way too many qualifications to be normal. And I've had my fair share of weird medical professionals. He wasn't as weird as I expected, however he might show his 'quak' level very soon. He's a nutritional and environmental specialist that looks at everything. He can basically just look at you and tell you what's wrong. He took a very very very long medical history and did a physical examination. So he's not interested in my possible Ehlers Danlos so that one's lost cause and it's off to a geneticist for that, however he is very interested in my migraines and allergies. He has sent me off for blood tests and even a thyroid ultrasound. I'll be going back in 2 weeks with the results to see if they show anything. Hopefully he actually can help me, that would be great!
Day 20: Have you met anyone with the same illness? Did it help?
With allergies, yes. Chronic pain in general, yes. Chronic migraines, no. Hypermobility syndrome, no. The people with chronic pain that I met really did help. It showed me that I wasn't alone and that there were people that I could reach out to if I need them!
Day 21: What networks or websites have you used for support or information about your illness?
I'm one of those people that has to research everything. Tell me a condition, a country, anything and I'll be googling it to find out all that I can about it. Therefore, I have read possibly everything there is to read about migraines and chronic pain. I've read a lot on hypermobility and I've found that the UK hypermobility association site is probably to best as it has a lot of information on the non musculoskeletal issues. I don't research allergies or anaphylaxis. Don't get me wrong, I know A LOT about food allergies, anaphylaxis, eczema, asthma etc, however whenever I read stories about anaphylaxis, read articles etc I feel sick. Physically sick. I can't do it.
I've found that the Australian Pain Management Association has been a great network for information and support for chronic pain. If you're in Australia I would highly recommend it!!
Day 22: How do you feel you've been treated by the medical system?
I've had a mixed experience being treated by the medical system. I've had some really amazing doctors and some really terrible ones. My GP has been so great. She didn't know much about any of my conditions other than allergies when I started having big issues with my health, but she's done a lot of reading and is always prepared and listens to all of my problems. I've grown up really fast the past couple of years because of my illnesses and she's really helped me and we've built a relationship that I really like. She is not the most talkative person but everytime I see her she smiles at me and asks me how I am and jokes with my about how often I see her etc. She's really lovely and she's become a great person to see because she's easy to talk to and very understanding. She doesn't treat me like I'm insane or a hypochondriac. Which is amazing! My pain clinic team was amazing and basically saved my life! My neurologist is great and also really helped me.
However, I have seen some terrible health professionals. People at the ER, my orthopedic surgeon, who basically told me that I was crazy! The first pain doctor that I saw was very dismissive of me and all round awful. No one really understands chronic pain yet and that can make it pretty hard to be heard when things go wrong. I've encountered so many medical professionals that just don't want anything to do with me because they simply don't know what to do with me. Chronic pain patients or those with multiple complex issues often get lost in the system and when I go to a new doctor I am always worried about how the appointments will go and if they will think I'm crazy. But finding good, trustful doctors is something that I really have to work on, you know, build a support system and all.
Anyway! Off to bed now, got my ultrasound and blood tests tomorrow :S I hate blood tests.
BB :)
Whilst on my break I got a call from a mystery number. Turns out it was this really important/recommended specialist offering me an appointment that afternoon. I had been on the cancellation list with an appointment booked in for September. Basically this guy is very hard to get into, so I was seriously seriously excited to get this call. This guy has come highly recommended at getting to the bottom of random, unidentifiable chronic illnesses i.e. ME! So I quickly called my mum and off we went.
He was... random. I expected a weird, slightly ASD guy as he has way too many qualifications to be normal. And I've had my fair share of weird medical professionals. He wasn't as weird as I expected, however he might show his 'quak' level very soon. He's a nutritional and environmental specialist that looks at everything. He can basically just look at you and tell you what's wrong. He took a very very very long medical history and did a physical examination. So he's not interested in my possible Ehlers Danlos so that one's lost cause and it's off to a geneticist for that, however he is very interested in my migraines and allergies. He has sent me off for blood tests and even a thyroid ultrasound. I'll be going back in 2 weeks with the results to see if they show anything. Hopefully he actually can help me, that would be great!
Day 20: Have you met anyone with the same illness? Did it help?
With allergies, yes. Chronic pain in general, yes. Chronic migraines, no. Hypermobility syndrome, no. The people with chronic pain that I met really did help. It showed me that I wasn't alone and that there were people that I could reach out to if I need them!
Day 21: What networks or websites have you used for support or information about your illness?
I'm one of those people that has to research everything. Tell me a condition, a country, anything and I'll be googling it to find out all that I can about it. Therefore, I have read possibly everything there is to read about migraines and chronic pain. I've read a lot on hypermobility and I've found that the UK hypermobility association site is probably to best as it has a lot of information on the non musculoskeletal issues. I don't research allergies or anaphylaxis. Don't get me wrong, I know A LOT about food allergies, anaphylaxis, eczema, asthma etc, however whenever I read stories about anaphylaxis, read articles etc I feel sick. Physically sick. I can't do it.
I've found that the Australian Pain Management Association has been a great network for information and support for chronic pain. If you're in Australia I would highly recommend it!!
Day 22: How do you feel you've been treated by the medical system?
I've had a mixed experience being treated by the medical system. I've had some really amazing doctors and some really terrible ones. My GP has been so great. She didn't know much about any of my conditions other than allergies when I started having big issues with my health, but she's done a lot of reading and is always prepared and listens to all of my problems. I've grown up really fast the past couple of years because of my illnesses and she's really helped me and we've built a relationship that I really like. She is not the most talkative person but everytime I see her she smiles at me and asks me how I am and jokes with my about how often I see her etc. She's really lovely and she's become a great person to see because she's easy to talk to and very understanding. She doesn't treat me like I'm insane or a hypochondriac. Which is amazing! My pain clinic team was amazing and basically saved my life! My neurologist is great and also really helped me.
However, I have seen some terrible health professionals. People at the ER, my orthopedic surgeon, who basically told me that I was crazy! The first pain doctor that I saw was very dismissive of me and all round awful. No one really understands chronic pain yet and that can make it pretty hard to be heard when things go wrong. I've encountered so many medical professionals that just don't want anything to do with me because they simply don't know what to do with me. Chronic pain patients or those with multiple complex issues often get lost in the system and when I go to a new doctor I am always worried about how the appointments will go and if they will think I'm crazy. But finding good, trustful doctors is something that I really have to work on, you know, build a support system and all.
Anyway! Off to bed now, got my ultrasound and blood tests tomorrow :S I hate blood tests.
BB :)
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