It’s been a while since my last post on here as I now have separate blogs for my hobbies. Thought I would do an eye update as they are still pretty crappy.
Saw my eye doctor and rheumatologist yesterday, had an orbital floor steroid injection in the right eye. Have a swollen and black eye appearing this morning but the scleritis pain is easing already so that’s really good.
The Rhumy noted that I have failed Rituximab. Azathioprine, prednisone and methotrexate (I’m still on the MTX but the sides are awful, I take it on Friday then the weekend is a write off). The next step is a cyclophosphamide infusion. This is worrying me a little because it much more hard core than anything else I have tried and you can lose your hair even at low doses so I don’t really know how I feel about that. I know that we have to try everything we can because nothing has worked so far and I am in chronic pain, some days the pain is so great I just lay there moaning to myself. Still it’s a big step taking such a strong chemo drug.
My vision is really variable as I have more than one problem – keratoconus, scleritis and severe corneal neovascularisation. Some days I can hardly see at all and other days my vision is pretty clear. At the moment I have not much vision at all in the left eye as the inflammation has made the cornea hazy. At my eye check yesterday I was just counting fingers, couldn’t read the letters even through the pin hole. This will clear pretty soon with the eye drops but it makes for such a hard life when you have to get up for work every morning.
I can’t even enjoy my colouring much at the moment the one thing that is keeping me sane right now is reading on my kindle, I adore reading and escaping into a good book. I can’t read normal books but on my kindle I can have a lovely big text and manage to read, even though I only get one sentence on a page and it gives my thumb a workout changing the page every 2 seconds lol
Sorry for any typos, can’t see too well at the moment!
If you are interested in my hobbies of adult colouring and reading you can catch me over here:
Thanks for reading and catch up soon!
I’m feeling very nervous about being at work this morning. Last Friday my boss of 10 years left and I now have a new boss. I don’t do change very easily, maybe because of my mental illness. I am so full of anxiety this morning I could throw up.
I have met my new boss as we have had a handover period, he seems very nice but I know things are going to be very different. Getting to know a new personality and having to work closely together, learning new tasks and different processes etc.
I know I can do the job so I have no idea why I feel so bad. You know when you are so comfortable in your job it’s like a pair of comfy slippers; you know how to do things without even having to really think about it. Don’t get me wrong I’m up for the challenge I am just feeling very very nervous!
Just writing this down is quite cathartic, it’s making me think about how I am feeling and is making me take a step back from my anxiety and do some breathing exercises so it was worth writing this. I have helped myself!
The boss is due in shortly, so let’s just see how we go, I am sure that we can make it work, I’m telling myself that change can sometimes be good!
Last week my doctor changed me over from daily Azathioprine to weekly Methotrexate. I couldn’t stand the side effects any longer and it wasn’t really doing much to help my eyes.
I am on week 2 of the Methotrexate, I spend 3 days crook as a dog (the day I take it and 2 days after), horrible but I guess it’s better than the 7 days I felt ill on the Aza. It’s unfortunate I take it on Fridays because I spend all weekend feeling awful then I’m back to normal again for work on Monday …. Hmmmm that was a bit of bad planning!
I’m starting to wonder if my eyes will ever improve, it always seems to be one step forward and then two back. It will be 2 years in November that I have been battling the scleritis, can’t believe how quickly time flies. But it’s not good when you think about it, nearly 2 years and they are no closer to finding out the root cause and really my eyes haven’t improved that much either. I have days where they are so painful I can hardly stand it.
My doctor always calls me a medical mystery and his VIP patient as I’m there every fortnight for my treatment. I guess when you have something relatively rare happening in your body that they can’t solve you do become a bit of a medical mystery. I have seen a rheumatologist, and probably about 6 different eye specialists and I’m still suffering with vision loss and chronic daily pain. The next step is the immunologist; my eye doctor has written a referral so I will see what they have to say when I get my appointment through.
I guess I just need to keep going, keep my mental health well and hope that one day I get some definite answers and a solution to the problem. I think the key for me is staying well mentally, if i’m good in that department I can cope fairly well with the pain and the daily struggle to see. I’m really working hard not to fall down that slippery slope to depression, so far so good!
This is so true, love this quote.
I have got so many health issues at the moment and I’m in daily pain but I am still so happy. It really could be a lot worse. For some crazy reason my mental health is great which is such a surprise considering the crap I’m going through.
I am in a really good place right now and I’m very thankful for that. When the pain wakes me up at night or I can’t see because my vision has gone all hazy I am thankful for the things I can still do to help myself and I’m thankful for the support of my beautiful family.
Life is good despite the hardships and I’m thankful for that.
I’m on my 3rd picture from Imagimorphia. It’s an awesome book, I love it. It’s just like Animorphia but has a bit more variety in it.
I’m going to buy another copy of both Animorphia and Imagimorphia as I want to colour some of the pictures I have done differently.
I got a few more Caran D’ache Luminance pencils in the post today, they are expensive so I buy a few at a time to increase my colours. I have plenty of colours since I bought the 132 set of prismacolors a couple of weeks ago but I still need more. Does that make me addicted? Lol
Had my eye injections last week and it was the most traumatic procedure! As I have mentioned before sometimes I can feel the injections because the anasthetic doesnt fully work due to the inflammation.
This time the pain relief didnt work at all. The doctor stuck the needle in my eye and I nearly jumped off the bed, I was begging him to stop it was so intensly painful. He was holding my head down so that I couldn’t move becuase I was in so much pain I was trying to move away from him, by this time I’m crying. Not just grizzling but full on proper crying and I couldn’t stop. The doctor felt terrible but not as half as bad as I felt! I was so freaked out by it I cried all the way home in the car becuase I know I have to go through it again in 2 weeks and i’m really scared that its going to happen again. I don’t think I could do that again.
I also got an injection just under the eye into the eye socket area and now I have a lovely shiner!
It sucks to have my eyes I really don’t want these injections but without them my vision will deteriorate and it’s bad enough already. I can’t think about the next treatment or I will have anxiety for the next week. I must have been a right bitch in a previous life to have to go through this now! Maybe the next life will be better and I will be healthy, wealthy and gorgeous LOL
Love a laugh and a good sleep so this quote is very apt for todays post!
Had fun with this one.
Being a visually impaired colourist isn’t always easy, even with my magnifying goggles on someimes I cant see well enough to colour. I have been pretty good lately and managed this one on Saturday.
Its from the book The Menagerie.
Colouring is my hobby, I love it and its very good for my mental health. It makes me happy. I dont drink or smoke or spend my money on anything else. I now have a heap of great colouring books and supplies but I want to get this amazing set of Faber Castell pencils in a wooden box. This set is beautiful and amazing and will last years but as with any high quality art item it is expensive.
I think I can justify spending this sort of money for colouring, having the best quality pencils makes it so much more fun and you get a much better result. This is my latest WIP from Animorphia which is my favourite book. See how these beautiful pencils make the colours pop (I have a few singles).
Yep these are definately next on my purchase list and that wooden box is just gorgeous!
I bought a few Faber Castell Albrecht Durer watercolour pencils to add to my Prismacolor range of colours. They are not as soft as the prismas but this means you are not sharpening them every 2 minutes like the prismas so they should last a lot longer. You can use them wet or dry and they are vibrant and nice to colour with. I like the idea of having the option of using them wet if I want to, nice to have the choice.
I’m working on an Animorphia piece at the moment, last night I used the Durers and used some Vaseline for blending. I was very impressed with the performance of the pencils so I’m certainly going to invest in a set. The Vaseline was fun to use, it made the pencils silky smooth and gave a nice finish.
As with any high quality art item they are expensive, but you really do get what you pay for. These bad boys really deliver. Now to save for a set!