After a notoriously long break from
blogging, I’ve decided to try and keep up with posting regularly. I'm planning to upload a post every Sunday, although of course, life is unpredictable and I never know how I’m going to feel
on any given day. I can promise I will do my best though. My plan for this blog is to post my
artwork, review books, and journal about my life. See my 'Artwork' tab for regular pictures of my latest work!
The last year has been an absolute rollercoaster. Healthwise, every day is different. We are still waiting to see a highly sought after specialist neurosurgeon, and I have a big decision to make. I could have surgery to tie off my shunt and stop it from functioning anymore. This would be experimental, to see if it'll help combat the debilitating symptoms I have right now. However, there is a risk my CSF (brain fluid) pressure will rise after the operation, and the effects from that could be damaging. Although what I have now is painful, there is no current risk to my eyesight. Having high pressure again would bring us back to how I was before my diagnosis of Idiopathic Intracranial Hypertension, five years ago. After years of being chronically ill, my condition is manageable, and I have the lifestyle and medications I need to feel the best I can, so I am leaning towards not upsetting the balance we already have.
A couple of months back I saw a fantastic cardiologist, and my POTS is being treated with a brand new drug called Ivabridine. It's finally helping to keep my heartrate down to a more manageable level. I still get dizzy and very lightheaded, but we think that's now more to do with my IIH now. My pulse rate stays at a far more sensible number now. Progress!
The last year has been an absolute rollercoaster. Healthwise, every day is different. We are still waiting to see a highly sought after specialist neurosurgeon, and I have a big decision to make. I could have surgery to tie off my shunt and stop it from functioning anymore. This would be experimental, to see if it'll help combat the debilitating symptoms I have right now. However, there is a risk my CSF (brain fluid) pressure will rise after the operation, and the effects from that could be damaging. Although what I have now is painful, there is no current risk to my eyesight. Having high pressure again would bring us back to how I was before my diagnosis of Idiopathic Intracranial Hypertension, five years ago. After years of being chronically ill, my condition is manageable, and I have the lifestyle and medications I need to feel the best I can, so I am leaning towards not upsetting the balance we already have.
A couple of months back I saw a fantastic cardiologist, and my POTS is being treated with a brand new drug called Ivabridine. It's finally helping to keep my heartrate down to a more manageable level. I still get dizzy and very lightheaded, but we think that's now more to do with my IIH now. My pulse rate stays at a far more sensible number now. Progress!
My achievements, although perhaps ‘untraditional’ for the average 19 year old, are more than I could ever have hoped for. I have found absolute joy and passion in my art, and my days have been filled with painting, drawing and weekly classes. I have had my artwork up in galleries. I have got through endless hospital procedures, operations and treatments. I have a close group of friends and family whom I love, and who love me back. And I have much happiness in my life. I am very lucky.
I am also planning on starting up a youtube vlogging channel, to give you all a bit more insight into what I get up to on a day to day basis! Keep an eye out for my first video! Any and all suggestions are more than welcome, whether thats to do with content, ideas for my channel name, or even tips and tricks, please send them my way!
My beautiful and happy daughter x Keep loving life! 💖💖
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