So it’s been a while since I wrote an update… but the news I’ve been waiting a long time for finally came… I’ve stabilised!!! Or stable-eyes’d, harh harh.
On Friday 3rd September I headed back to my second home; Queen Elizabeth Hospital, in Birmingham. I was so nervous, especially as recently my strobing spot has made a return. But, after coffee, scans and a consult, I was told that my latest flare, which had started in June, was now officially stable. I can't tell you how overdue that news was!
The inflammation has cleared and the blood vessels from the bleed are now sealed, all thanks to an increase in immunosuppressive tablets, fortnightly immunosuppressant injections and a course of three eye injections.
My scans showed amazing improvement, and I appreciated that my ophthalmologist really took the time to show me the differences between the OCTs, and explaining what I was looking at in layman's terms. Even my ophthalmologist was impressed by how much my scars had flattened... 'Flattened' might sound strange, perhaps a bit of a backwards compliment, but in the world of PIC, if someone calls your scars flat - with a definite 'L' in there, btw - then you may as well have been named as the latest face of Vogue. Fluffy, on the other hand, now that's a top-tier insult. It may sound something harmless that a toddler might scream at you, but trust me, 'fluffy'... that sh*t hurts.
Although my scans say I am stable, I must admit that my vision has dropped again over the last couple of weeks. It might just be because I've been ill recently (with the world opening up again, the dreaded colds are doing their rounds again), or maybe the change in vision is lighting is playing tricks on me as the darker nights draw in, but I won't lie, this deterioration makes me nervous. If I'm already flaring, then theoretically, the Humira injections *should* help keep my PIC calm, but when it comes to a chronic disease, it doesn't feel like the word 'stable' will be passed around all too often, and when it is, there is no telling how long you'll be gifted it for.
But I am trying to maintain a glass half full, flat scars kind of optimistic attitude.
Reassuringly, I've gotten good at identifying when I'm flaring and knowing at what point the flare will show on scans, and despite the changes, it doesn't seem like we are there yet. So all that I can do between now and my next appointment is monitor my vision, and check on my Amsler grid once a week.
So being in humour of my attempts to stay glass half full, I took the good news when it was handed to me; partly because I really wanted this news to be true, but also partly because it feels like a good excuse to go hard on treating myself. I marked the occasion like I mark all my PIC milestones; with a Chinese takeaway. I may mark the good and the bad milestones like this; but in chronic disease we need treats at every point, right?! (Sometimes that includes making it through the day without taking a nap, although this momentous occasion is momentous simply because it doesn't happen all that often).
But this was GOOD news. Rare, good news. So the rare, good news also got an extra level of celebration with a little glass of fizz; because wine not (harh harh, again). I feel it was well deserved, especially as this flare brought a big milestone: my tenth ever needle-stabbing-in-the-eye experience! Now that's one you don't hear everyday. And probably a weird one to brag about... but still.
As part of the treatment for this flare, I needed my eighth Eyelea injection, but, as I’ve also had two Ozurdex implants, it was my tenth eye injection in total! Well technically, technically, it was my eleventh needle-stabbing experience, that is if we count what happened in February. 'February' refers to the traumatic attempted stabbing of the Ozurdex implant that simply would not go in to my eye, because of my atypically 'firm' eyeballs. It was painful, I had another weird insult ('firm'), my eye hurt for a while after, and we had to go back back for a second attempt. We got it in eventually, but it was an ordeal that I would prefer not to repeat.
I’m hoping now that I’m on Humira, it'll be the end of eye injections. I won't count my chickens yet though, as I have been warned that because I am prone to CNV, it is possible that I could still experience bleeds. But, again, I'll take the good news when it's handed to me, and I am super pleased that this course has reversed the central distortions that came on in June.
I've heard the words stable before - last November - and I've heard them again at this latest check up. 'Stable' didn't stick around last time; that horse bolted in February when a big ol' flare rocked up with a vengeance.
But maybe this time things will be different. My next appointment is early November, and instead of hearing a repeat from the last consultation, I'm really hoping for one up: "you're still stable". Fingers, and not eyes, crossed.