Tag Archives: Low Vision

A New Cornea For Me!

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I am absolutely stoked that my eye doctor has just approved me for my first corneal transplant surgery after battling scleritis for 3 years.

I have started a new blog to document this journey, it’s a corneal transplant diary.  If you would like to follow this journey you can at:

http://www.newcornea.wordpress.com

Hope to see you there!

By the way I am super excited to be getting this chance at normal vision.  I have never had anywhere near normal vision so I can’t wait!

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Feeling Mentally Exhausted :(

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It’s really hard and very depressing when you can’t do the hobbies that you love due to ill health.  In my case my ill health is vision loss and chronic eye pain.

My vision has got significantly worse over the last several months and I have had to stop colouring. I love colouring, when you are in the moment it is very relaxing, I have some beautiful books and it gives me a lot of pleasure.  I can live with giving up colouring for now I will get back to it after my corneal transplants.

What I am finding really difficult is struggling to read.  Reading means everything to me; I constantly have a book on the go. I get so much pleasure from reading.  I used to have no trouble reading on my kindle but now I struggle to read even on the biggest font.  It just looks so washed out and pale that I am having a lot of trouble reading the words on the screen.

Reading a real book isn’t an option, can’t see them either.

I have found that in the kindle app on my phone the black background with white text is pretty good if I use a big font. It’s still fuzzy but at least I can read it if I wear magnifying reading glasses over my contact lenses.  It’s not ideal on the phone as when you have a big font you are turning the page constantly as you don’t get many lines on the page.  It’s good for reading in bed though, the big tablet isn’t great for that.  My solution: – I have ordered a 7” tablet, should be good for reading in bed and on the go such as hospital waiting rooms and I can have a decent size font on it.

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This is ridiculous right?  At least I can read which makes me really happy  🙂

Being unable to read really makes me realise how blind I actually am, it’s scary and it worries me a lot that one day I will go fully blind before they can figure this thing out.  My corneas are diseased, worn out, full of scars and have a lot of blood vessels that shouldn’t be there.

It’s not just hobbies that are getting impossible, generally day to day life is a struggle.  I fell over a couple of weeks ago because I didn’t see a step, I really hurt myself.  Nothing broken fortunately but it could have been a whole lot worse.  Work is a daily struggle to see my computer screen, every day I have a monster headache from straining to see.

There is no way that I can afford to give up work so I have to try and battle through the headaches, eye pain and low vision and try to do the best I can every day.  I think I do ok, I hardly ever take a sick day but boy my days are hard.  No wonder I am always mentally exhausted.

The only thing that is going to help with the vision are corneal transplants, I am hoping that my doctor will schedule me in for the left eye (my worst eye) within the next 3 months.  I need this so badly.  I am also starting a new Infliximab infusion next week which I hope will help with the inflammation and eye pain.  I am having infusions at week 0, 2, 4, 6, 8 & 12 as a trial and if that is successful I will have them every 8 weeks going forward.

Keep your fingers crossed for me!

 

The Eye Saga Continues. Scleritis & Keratoconus.

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For the past 6 weeks my eyes have been really good in terms of the scleritis.  I have had a white eye and no pain, even my vision seemed to be a bit sharper.  I was really hopeful that the Cyclophosphamide (Endoxan) was working so that I could concentrate on getting my vision better and my eyes ready for corneal transplants.

Yesterday afternoon I seemed to start a flare up, today my right eye is a little red and quite painful.  I am freaking out and a bit gutted actually because I was really thinking that this was the medication for me and things would just get better and better.  Today my vision is awful and I am really struggling.

I saw my eye doctor yesterday morning and he was pleased with my progress, then a couple of hours later I’m flaring, how is that for bad luck, it could have happened when I was at the eye doctor!

The Endoxan has been a bit of a bumpy road so far, the first couple of weeks I felt fabulous then I felt like absolute death for a couple of weeks as my blood pressure plummeted. I could hardly stand up without falling over.  We got the BP sorted out and I started to come good again, until yesterday.  Now I feel really worried that I am going to fail another treatment.

I have a swelling under the right eye and the doctor thinks that there may be a cyst in there caused by the regular orbital floor injections I have been having over the last year or so.  It looks ugly like I always have a bruised eye.  If it’s not a cyst it will probably be thickening of the tissue from the needles.  I hope they can do something about it.

Luckily I am seeing my Rheumatologist tomorrow to see what my bloods are doing and to get some feedback on my progress.  Hope I get some positive news, maybe I need a dose adjustment.

Wow we just had a snake in the office and all the girls were like OMG theres a snake, and i’m like what snake, where?  just shows how bad my vision really is.  That makes me really sad.

Corneal Transplant for Keratoconus

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Finally for the first time in over 2 years I am pain free from scleritis (eye pain).  That is amazing and down to the Cyclophosphamide I started taking about 4 weeks ago.  The first week I felt terrible, really nauseas then I came good and felt great for a couple of weeks.  I was thinking this is brilliant, then in week 4 I am getting light headed, dizziness and fatigue.  It’s worth it not to have that awful horrendous eye pain!

Assuming my bloods are ok when I go back to the rheumatologist in 3 weeks I can move on and start thinking about my corneal transplants and where I need to be to be able to have my surgery.  I have severe corneal neovascularisation, the vessels I have are big and deep and there are plenty of them.  They are not ghost vessels either, they are still active and blood filled.  I can’t have my surgery whilst they are active as the graft would reject.  In my doctors words “it would be a disaster”.  One positive thing, in my eye check-up last week my doctor felt like there were less vessels in the right eye and maybe the Cyclophosphamide has got rid of some already.  I hope so that would be amazing.

I had two wishes, 1 was to get rid of the pain – check! and 2 was to be able to see properly.  So I am halfway there!  Point 2 is going to be harder to achieve, every time I see my eye doctor I’m like can I get my graft yet and always the answer is no.  Hopefully one day soon I will get a yes.  I am so desperate to improve my vision, I really struggle in particular at work reading my computer screen.  Some days are really awful and I can hardly see a thing.

I know having a graft doesn’t automatically guarantee good vision but it’s surely got to be better than looking through a forest of blood vessels, even if I have to wear a lens on it I will be ecstatic.

Keeping my fingers crossed that next time I get a check up even more vessels have melted away.

An Eye Update – scleritis and Keratoconus

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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:

www.colouringforwellbeing.wordpress.com

www.bonniesbooktalk.wordpress.com

Thanks for reading and catch up soon!

 

The Battle Continues!

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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!

 

A Very Sore Eye, So Lets Read A Book!

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I have two hobbies, colouring and reading, I adore them both.  Had some treatment on my eye for my scleritis earlier in the week as I am having a very painful flare up. The whole right side of my head was throbbing.

Anyway i’m a bit too sore to colour and my vision isn’t that good this week either so i’m going to read.  I would literally die if I couldnt read so lets hope I never go truly blind! I love my kindle so much, when i’m having bad vision I can make the text huge if I need so I can still read.  

If i’m reading or colouring my wellbeing is good

To Colour or Not To Colour?

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I have a dilemma!

Colouring is really good for my wellbeing and mental health, it makes me happy and relaxed and I really enjoy it.  As you know I have severe eye pain and vision problems which quite often make doing day to day tasks difficult.

My problem is do I colour on my really bad eye days to make myself feel better and risk ruining a picture that I have put everything into and really like or not colour on those days and potentially feel bad.

Over the last couple of weeks I have ruined two beautiful pictures that I spent hours and hours colouring because my eyes were bad and I was in pain.  The pics turned out so awful I didn’t finish them.  Doing this seems a waste of my time,
colouring book pages and supplies.  Or is it just good therapy, good practice and don’t worry about what I produce?

I don’t know, I’m in two minds really, I colour for my wellbeing mostly, but I also colour to show my friends because I love it and am quite good at it and produce some good work.  Showing my friends and IG followers makes me proud as
though I have achieved something, and it makes me feel very good to get compliments and comments, which is also good for my wellbeing.

I guess I need to take it one day at a time and gauge how bad I feel and how much I need to colour for therapy.  I could keep a separate book for days that I just need to colour for my wellbeing so that I don’t mess up any more of my favourites. 

I dunno, it’s complicated being me!

Bleeding from the Eye!

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Had my Rituximab infusion last week, one of the side effects is things like bleeding gums etc.  Well I had a bleeding eye, twice!  Crazy right.

It was so weird when my eye bled.  It was like a white curtain came down over the eye for a couple of minutes and I couldn’t see a thing it was a total white fog. Then the bleeding happened and suddenly I could see again and everything was clear.

What I reckon is going on is that the blood vessels in my cornea are very fragile, and the rituximab has made them even more fragile and they are bleeding.  I see my eye doctor shortly so I will mention it to him and ask his opinion.

Corneas are not meant to have blood vessels but I have severe corneal neovascularisation.  I have large deep vessels growing into the cornea, caused by the inflammation from Scleritis. They are causing vision loss and I need a corneal transplant.  Whilst the vessels are active, i.e. filled with blood I can’t have one because the graft would reject.  In my doctors words it would be a disaster.  So anyway we need the vessels to empty and stay that way for several months before we can consider the surgery. I have Avastin injections into the eye every two weeks to help with this.

Well the eye hasn’t bled for a few days so i’m thinking that whatever has happened is over.  I have my next infusion in 3 weeks so I wonder if it will happen again then! Time will tell I guess.

 

 

 

Feeling Knackered

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Crikey this chemo knocks the stuffing out of you!   Had my infusion yesterday,  was nauseous and getting hot flushes all day they had to give me antihistamines,  anti nausea pills,  paracetamol and steroids! .  Threw up last night and today I’m so tired and fluey I’m barely functioning.

I can’t wait to get home from work to lie down!

The nurse called me earlier to book my next one in for 4 weeks time,  oh joy!

Now to get through the next hour till home time……