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!
Haven’t posted much lately as my eyes have been so sick. I am having terrible vision problems, pain and headaches.
I have 3 severe eye problems, keratocous, scleritis and corneal neovascularisation. The blood vessels that are growing into my corneas are large and deep and go almost into the middle. This in itself is affecting my vision but i have the added trouble in the left eye of the blood vessels leaking blood and therefore causing hazyness as the cornea is swollen. I have pretty much no vision at all in the left eye at the moment.
Every fortnight I have injections of Avastin into my eyes. The left eye is fine, no trouble at all, but the right eye with the scleritis is so painful for 3 or 4 days after the injections. Aparantly the pain is caused by scar tissue and inflammation. Every second week is a write off and a nightmare.
I need corneal transplants in both eyes to restore my vision but whilst the blood vessels and scleritis are active I cant have it done. In my doctors words, it would be a disaster as there would be a 95% chance the new corneas would be rejected.
My doctor is trying so hard to fix my eyes but there is something going on with my body thats causing this and they cant figure it out. I really am a medical mystery as I have had pretty much every test possible and they still cant find a cause.
Guess it could be worse but thats no consolation when i am struggling to see and live a normal life.
Good news is I am managing to stay mentally well, no sign of the black dog knocking on my door
I went to Kmart at the weekend and got some packs of 8 gel pens, then came home and packed them up with a colouring book. I have 9 sets to give away as gifts to mental health patients in my community.
I hope that whoever gets them enjoys the experience of colouring as much as I do and that it helps with their wellbeing.
It makes me feel so warm and fuzzy inside to be able to give these gifts and if colouring makes a difference to any of the recipients lives it will have been worth it.
I need more new colouring books to replace the ones I am giving away lol!
Since I started colouring my tastes have changed as I got a little better at it and saw what an amazing assortment of books are out there by some very talented artists. As a result I have probably 6-8 books or more that I know I will never open or that just has one page coloured.
The 6 above are my current favourites, a couple are still on their way and I cant wait for them to get to me. Anyway what should I do with the books im not going to use?
I have had an awesome idea (in my head its awesome anyway lol). My idea stems from the fact that colouring has really helped my mental health, colouring makes me happy and thinking about colouring and buying new supplies excites me. Anyway you get the point, colouring is amazing for mental health. So lets get back to the point in hand, my cunning plan ……
Next time I see my psychologist in a couple of weeks i will take my surplus books so that she can ask her other patients if they would like to try colouring. They can have a browse and take a book home to keep. These people may never have given colouring a thought and they should totally give it a go as it does help with wellbeing. I dont see a negative in this plan, but I will certainly check if its ok with her, I won’t just dump a bag of books on her desk! Also if nobody wants them I will take them back, she won’t be left with a stack of books.
I might also buy half a dozen packs of cheapo gel pens so that the people who want to give it a go will have a starter set to get them going.
What do you guys think? Win or Fail?
Am feeling a bit low right now, my eyes are in a shocking state and I cant see any end to it. I still have practically no vision in the left eye, its just a white fog and the right eye is red and sore. The combination of two severe eye diseases (keratoconus and scleritis) is taking its toll on them.
I had an orbital CT scan last Friday and I am seeing the eye doctor tomorrow hopefully to get some help. I am really struggling at work, reading paperwork and the computer screen is a real challenge at the moment. Luckily I have the BEST boss, he is very in tune with my illness and helps me as much as he can.
Although it is a struggle to see I am finding my colouring really helpful. My lovely partner got me a set of magnifying goggles with a light on and they have made so much difference. Its so difficult to colour when you only have partial vision in one eye but I am still enjoying it and it takes my mind off of things. This is my latest piece from Alices Adventures in Wonderland. I think if I didnt have my colouring I would go nuts right now, it is very therapeutic. I also rely heavily on reading to keep my mental health stable. I read on my tablet where I can make the text gigantic so that I can see it. I am having to use a magnifying glass to see the screen on my phone and tablet at the moment so the eye situation is not good.
Hopefully will get some positive news tomorrow. Sorry for any typos, im not seeing so well so its difficult!
This is how I try to live my life.
Anyone with KC knows we see the world a little differently to people with normal eyes, and my vision has been worse than usual lately due to other health issues.
I started to colour this last night with the help of a magnifying glass and I thought that was a pretty pattern. It was only this morning I realised it is a flower and I have coloured it all green. Do we even have green flowers? Im not sure!
I know it doesnt matter what colour i do it as its just a picture for a bit of fun and relaxation, the bit that upset me was that i couldnt see that it was a flower, my eyes just didnt see that at all. It has made me realise how bad my vision is and its not going to get any better.
I have a lot of health stuff going on right now and I am trying to take one day at a time but sometimes it gets to me. Had a bit of a breakdown last night and had a good cry. Feeling much better this morning ☺
I was thinking the other day that I must have been colouring for about 4 years now, way before it became popular and all the beautiful colouring books came out.
I now have a great collection of books and pens etc. Colouring is so much fun and really relaxing. Great for relieving stress and anxiety.
I have found though that as I am quite vision impaired I have to colour by torch light in order to see the lines which can make it difficult.
The good thing is, because my vision is bad I don’t see the bits I have missed or when I go outside the lines LOL my colouring always looks perfect to me but to anyone else it probably looks like a 3 year old has done it!
This picture is from Millie Marotta’s Tropical Wonderland book. It has some awesome pictures and the paper is nice and thick and good quality.
I’m off to do some colouring now…..