I can hardly believe it has been 4 years since my first ever surgery and 3 years since I started this blog. It has been an emotional and crazy journey and as many of you know, the journey continues.
So it has become a custom to update you all at least once a year and have a general check in on things. I would like to apologise if I have been a bit slow in responding I have had a lot of work on. Alongside that I have also had to compete with the usual family dramas and ill health.
So an update of my health:
Numbness: Yes. All around my chin, teeth and lower lip on both sides. I doubt that I'll ever regain feeling here. But to be honest I count this as a blessing. I'd rather be numb than to have any more pain or nerve issues. I spoke to a lady a few years back who had the same surgery as me and instead of the numbness, she experiences excruciating pain every time she uses her lips. So this has meant talking, eating, drinking and even kissing her husband and children has become a total nightmare.
Pain: I would rate an average of 6 out of 10. This fluctuates and decreases with my stress levels and hormones. I experience a range of different symptoms. I have muscle weakness and pain in my face and neck. I also experience nerve pain in my trigeminal nerves and down my neck and arms. This means that I find it hard to grip or carry things. In addition to this, I also experience face and head migraine attacks. These have been kept under control with hormones and Sumatriptan nasal sprays.
Infections: Unfortunately, yes! I am still experiencing reoccurring sinus infections. I take regular courses of Doxycycline and have recently started trying ear candling. In the hope of clearing my sinuses a little more.
Mental health: Relatively stable and content. I can cope with the daily pain and have learned to accept it. However, when I do have bad pain days or I do get an infection I find my mood can become very low. Then the feelings of being worthless and a freak kick in. I also become really agoraphobic and hide myself away at home not wanting to speak to anyone. I try to distract myself from dwelling as much as possible.
I still see my psychologist and psychiatrist and they have been really good throughout the whole process. I also try to read as much as I can. This helps me to escape. If I can't read a good film, a bath or a 30-minute meditation or classical music session soon make me feel relaxed.
Current medications for pain: Co-Codomol 30/500mg, ibruprofen 400mg, Amitryptline 20mg, Loestrinen 20 and Sumatriptan 5ml nasal sprays. I have some Diazepam in the cupboard for bad episodes. But I have not been bad enough to use it yet.
Herbal remedies used: green tea, aloe vera, acai berry, raspberry ketone, vitamin D and fish oils omega 3, 6, 9. For the inflammation I drink pineapple juice and use ice packs. When my pain is bad I'll often use a microwave wheat pack. If I can afford it a steam room at a spa really does a great job of easing my pain. It also helps to clear my sinuses and it is actually the only place I've felt completely pain free and relaxed. Such a shame I can't have one at home haha. I also still go for massages. I switch the treatments up every now and then. I've tried hot stone massage, Swedish massage, deep tissue massage, reflexology, crianial therapy and ear candles. I find every single one of these eases my pain a little. It never goes 100% but it does help to bring it down to a more comfortable level.
In amongst all of our work and commitments we even managed to visit Rome and Tuscany in the summer. It was absolutely amazing!
I also had the UK Blog Awards in April. My brother and I went along all suited and booted. Thanks to your votes I was announced as a finalist at the end of last year. Unfortunately, I didn’t win but I was really grateful to be in final. It was a great night and a fabulous experience. I wasn’t expecting to win because this area is so niche, but when my name wasn’t called I did feel a little disappointed. Thinking about it now, I am unsure if I would have made it to the stage in my floor length dress and heels (not mention the 5 glasses of champagne I’d had) if I had won.
On the eve of my 4 year anniversary I started to write this blog. But I have been so busy that it has taken until now to finally get it finished. As some of you would have seen, I took the bold move and dyed my hair red. Well auburn. I wanted a change and I wanted to make a statement. I really like it and am planning to keep it up for a while. My confidence is nowhere near what it should be, but i am starting to feel a lot happier about myself and the way I look. Alex tells me I am beautiful everyday but I still find it hard to believe anyone could find me attractive. I suppose a lot of other people feel like this too.
Oh and we have finally starting to get mum's house in order and after a year of having no garden we are finally BBQ ready. Although, now it is winter and we won't see any sun here in the UK for another 6 months. But still, exciting news!
All in all, this year hasn't been bad at all. I still hope one day I'll be pain free but I'm unsure whether this will ever happen. I'm in a much better place mentally and physically, so my pain level is much more manageable now. I find it quite difficult to blog now that I am moving on from the experience. But I always have time for people who email me. This is such a unique and totally terrifying experience for anyone to go through. Even living with chronic pain brings its own unanswered questions and worries. I would like to thank everyone who has been there for me through my journey. Especially my mum, my brother, my friends (Theresa, Jackie, Aash & family, Peter, Jeremy, Ali and Mehmood) and my hospital consultants and medical professional. Without every single one of you I wouldn't be where I am now. And for that I am truly thankful.
So on that note... Another year gone, another successful follow up appointment at Guy's and my pain management programme continues.
As always feel free to message me and join me on social media. I'm not on often but I'll reply when I can. Also check out my FAQ's blog here: http://goo.gl/UnHxfi
Sending my love.
Always,
Steffie
Visit my website to download special patient packs, leaflets and e-books.
www.jawandface.co.uk
..and join me on social media
Facebook: www.facebook.com/steffiesstuff
Twitter: www.twitter.com/jawandface
Instagram: www.instagram.com/jawandface
So it has become a custom to update you all at least once a year and have a general check in on things. I would like to apologise if I have been a bit slow in responding I have had a lot of work on. Alongside that I have also had to compete with the usual family dramas and ill health.
So an update of my health:
Numbness: Yes. All around my chin, teeth and lower lip on both sides. I doubt that I'll ever regain feeling here. But to be honest I count this as a blessing. I'd rather be numb than to have any more pain or nerve issues. I spoke to a lady a few years back who had the same surgery as me and instead of the numbness, she experiences excruciating pain every time she uses her lips. So this has meant talking, eating, drinking and even kissing her husband and children has become a total nightmare.
Pain: I would rate an average of 6 out of 10. This fluctuates and decreases with my stress levels and hormones. I experience a range of different symptoms. I have muscle weakness and pain in my face and neck. I also experience nerve pain in my trigeminal nerves and down my neck and arms. This means that I find it hard to grip or carry things. In addition to this, I also experience face and head migraine attacks. These have been kept under control with hormones and Sumatriptan nasal sprays.
Infections: Unfortunately, yes! I am still experiencing reoccurring sinus infections. I take regular courses of Doxycycline and have recently started trying ear candling. In the hope of clearing my sinuses a little more.
Mental health: Relatively stable and content. I can cope with the daily pain and have learned to accept it. However, when I do have bad pain days or I do get an infection I find my mood can become very low. Then the feelings of being worthless and a freak kick in. I also become really agoraphobic and hide myself away at home not wanting to speak to anyone. I try to distract myself from dwelling as much as possible.
I still see my psychologist and psychiatrist and they have been really good throughout the whole process. I also try to read as much as I can. This helps me to escape. If I can't read a good film, a bath or a 30-minute meditation or classical music session soon make me feel relaxed.
Current medications for pain: Co-Codomol 30/500mg, ibruprofen 400mg, Amitryptline 20mg, Loestrinen 20 and Sumatriptan 5ml nasal sprays. I have some Diazepam in the cupboard for bad episodes. But I have not been bad enough to use it yet.
Herbal remedies used: green tea, aloe vera, acai berry, raspberry ketone, vitamin D and fish oils omega 3, 6, 9. For the inflammation I drink pineapple juice and use ice packs. When my pain is bad I'll often use a microwave wheat pack. If I can afford it a steam room at a spa really does a great job of easing my pain. It also helps to clear my sinuses and it is actually the only place I've felt completely pain free and relaxed. Such a shame I can't have one at home haha. I also still go for massages. I switch the treatments up every now and then. I've tried hot stone massage, Swedish massage, deep tissue massage, reflexology, crianial therapy and ear candles. I find every single one of these eases my pain a little. It never goes 100% but it does help to bring it down to a more comfortable level.
I also had the UK Blog Awards in April. My brother and I went along all suited and booted. Thanks to your votes I was announced as a finalist at the end of last year. Unfortunately, I didn’t win but I was really grateful to be in final. It was a great night and a fabulous experience. I wasn’t expecting to win because this area is so niche, but when my name wasn’t called I did feel a little disappointed. Thinking about it now, I am unsure if I would have made it to the stage in my floor length dress and heels (not mention the 5 glasses of champagne I’d had) if I had won.
On the eve of my 4 year anniversary I started to write this blog. But I have been so busy that it has taken until now to finally get it finished. As some of you would have seen, I took the bold move and dyed my hair red. Well auburn. I wanted a change and I wanted to make a statement. I really like it and am planning to keep it up for a while. My confidence is nowhere near what it should be, but i am starting to feel a lot happier about myself and the way I look. Alex tells me I am beautiful everyday but I still find it hard to believe anyone could find me attractive. I suppose a lot of other people feel like this too.
All in all, this year hasn't been bad at all. I still hope one day I'll be pain free but I'm unsure whether this will ever happen. I'm in a much better place mentally and physically, so my pain level is much more manageable now. I find it quite difficult to blog now that I am moving on from the experience. But I always have time for people who email me. This is such a unique and totally terrifying experience for anyone to go through. Even living with chronic pain brings its own unanswered questions and worries. I would like to thank everyone who has been there for me through my journey. Especially my mum, my brother, my friends (Theresa, Jackie, Aash & family, Peter, Jeremy, Ali and Mehmood) and my hospital consultants and medical professional. Without every single one of you I wouldn't be where I am now. And for that I am truly thankful.
So on that note... Another year gone, another successful follow up appointment at Guy's and my pain management programme continues.
As always feel free to message me and join me on social media. I'm not on often but I'll reply when I can. Also check out my FAQ's blog here: http://goo.gl/UnHxfi
Sending my love.
Always,
Steffie
Visit my website to download special patient packs, leaflets and e-books.
www.jawandface.co.uk
..and join me on social media
Facebook: www.facebook.com/steffiesstuff
Twitter: www.twitter.com/jawandface
Instagram: www.instagram.com/jawandface
You can now continue the chat and speak with other patients on my new closed Facebook group:
Looking forward to connecting with you soon!
Lots of love always,
Steffie
x.x.x
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