Author Archives: bigrollercoaster

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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Steptember Challenge for the Cerebral Palsy Alliance

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Hi All

From Monday, 4 September I will be taking on the challenge of completing 10,000 steps a day, for the entire month of Steptember to raise vital funds for Cerebral Palsy Alliance.

The average office worker only takes around 3,000 steps per day, so 10,000 steps a day is going to be quite the challenge.

But it’s for a very worthy cause.

Cerebral palsy is the most common physical disability in childhood. One in two people with cerebral palsy are in chronic pain due to the tightening of their muscles. Many will never be able to take a single step without assistance.

A donation of any amount would be greatly appreciated.  We smashed our original goal of $500 and now are only $127 short of our new $1000 target.  This charity means a lot to us as our 7 year old nephew Joshua has Cerebral Palsy.  Being an office worker this is going to be a real challenge but I am committed to walking 10,000 steps or more every day for the month of Steptember.

You can donate to my fundraising page: https://stept.io/pkD3yal

Any amount you contribute would make a huge difference to children and adults living with cerebral palsy and of course encourage me to complete my 10,000 steps per day!

Thank you so much,

Dawn Jones

P.S. You’ll receive an automated receipt as every donation over $2 is tax deductible.

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!

 

Getting Fit with the Samsung Gear S3 Smart Watch

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I love gadgets and if they can help with fitness even better.  Last week I got a Samsung Gear S3 Classic smartwatch and already I love it and can’t imagine my day without it. However did I manage without one?

I particularly like the Samsung Health app, I can track everything from steps taken, sleep and floors climbed you know the usual fitbit type stats, I can track water and caffeine intake, heartrate, stress and spo2 levels.  It can track lots of different types of exercise, I use the walking one and it tracks my whole walk including a map of the route I have taken and gives me encouragement along the way.

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I have a desk job so my day is fairly sedentary, if I don’t move for 50 minutes my gear encourages me to get up out of my chair and either walk or do some stretching exercises.  I generally get up and do a lap of the office.  I think that has also helped my eyes.  Because I have very poor vision I suffer with eye strain and headaches, getting away from the computer every hour even for a minute or two really seems to be helping.  I probably look like a nutter just walking a lap around the office but hey it’s doing me good so who cares what anyone thinks!

The layout of the watch is very intuitive and its bright and colourful screen is easy to read and its fun to look at my stats.  I have also uploaded music and audio books to the watch so with my Bluetooth earphones I can listen to books or music on my walks without having to lug my phone along.

I have a few other apps on there like My Fitness Pal to keep a track of my macros and a few other interesting miscellaneous apps to keep me amused.  I wasn’t sure if I would use the watch to its full capabilities but now I have it I am using everything.  I really feel like I am getting good value out of it.  I really like Samsung Pay, and I love how your phone notifications, emails and texts go to it.  I was worried about reading the small screen size but it has been great, it’s really easy to read.  The other day my partner and I were in the car and my mother in law called, my phone was in the back of the car and being in my partners car it didn’t come through the Bluetooth so I answered it and spoke on my gear.  Wow it was good; it was loud and clear with no distortion.  This thing can actually take/make phone calls as long as your phone is within range.  How cool is that!

It also takes a 22mm watch band so you can change the strap to suit you and really make it your own.  This is a really good feature as most smart watches take the manufacturer’s branded bands that could cost a fortune to change.  For example I know of someone who got an Apple watch strap and it cost $200 from the apple store, I got the same type of band for $16 and it was virtually impossible to tell them apart in terms of quality.  So it’s a pretty big deal being able to shop around and use any brand of strap.

I have convinced my partner to buy one too so I am looking forward to doing some challenges together which should be fun.

Well I think you have guessed, yes I love my Gear S3, its brilliant.  It’s fairly large but that suits me with my bad vision.  Actually I don’t think it looks too big on my wrist at all, it just looks very very cool!

Well my Gear is telling me to move my butt so off I go …….

 

Sub-Tenon’s Steroid Injection for Scleritis

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My new Infliximab treatment has been approved by the hospital but they are taking their time sorting out my first infusion.  Whilst I am waiting my eye is still flaring up pretty badly so over the last 3 weeks I have two Sub-Tenon’s injections.

I had been getting orbital floor steroid injections but the last one I had didn’t work at all so we tried the Sub-Tenon.  With this type of injection the doctor makes a little cut in the top layer of the eye with a pair of surgical scissors and then injects the dose of steroid into the cut area so that the steroid goes all though out the eye in the layer really close to the eye.  The first one worked like a dream, it was brilliant the pain relief was amazing.  I had a very tender eye for a few days where the cut was made but the scleritis pain was gone, it was awesome.

This week I had another one. I have this problem that when my eye is really inflamed the anaesthetic doesn’t work too well.  The doctor put heaps of numbing drops in plus an anaesthetic injection but when he made the cut I nearly jumped through the roof as it wasn’t numb at all and it seriously hurt.  Well imagine your eye being cut with scissors it would hurt!

Anyway he found another spot that had got numb and repeated the cut and did the injection.  I am really feeling the injection pain this time as I have two cuts, a small one he started to do and the main one.  My eyes are both feeling pretty crappy at the moment.

My vision seems to be affected more this time; I am struggling a bit this week.  Work has been particularly tough, I am having to have the font on my computer massive to see anything and the pain is getting to me a bit.  I am so glad it’s the weekend so I can rest my eyes a bit and let them recover.

Hopefully I will get to have my infusion shortly, would be great because my doctor says when I am on the Infliximab he is happy to go ahead with my transplant.  Cannot wait for that day!

Finally Getting Some Decent Weight Loss

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IMG_20170704_144345_821I have been struggling for so long to lose the weight that I have gained from my medication and the associated appetite gain.  I think over the last three or four years I have probably gained around 30 kilos.

Finally I have cracked it …. Low Carb!  I have been low carbing it for a while now and although the weight is coming off slowly, the point is it’s coming off and I am not gaining every week like I was before.

It feels so good to feel my clothes get looser and to fit in stuff that I haven’t been able to wear for several years.

My diet now consists of meat and vegetables/salad and some cheese.  I haven’t found that I am too hungry as I have been also drinking over 2 litres of water a day.  I have given up milk and now drink black coffee which took some getting used to!

I am also doing intermittent fasting.  I do a 16 hour fast every week day, sometimes I have breakfast at the weekend but in the week I generally break my fast at 12 pm for lunch and don’t eat after 8 pm.  I am finding that this is really working well for me and I am getting into the routine of when I can eat.

We are slightly adjusting our eating plan at the weekend to include some beans and lentils so I will see how that goes next week.

Also I think it has helped to open an Instagram account just for my diet and weight loss.  I have followed a heap of people that are on the same type of eating plan and we share tips and recipes.  This social interaction keeps me motivated which is a big part of the struggle.

Well I am about half way there so that is amazing progress.  The good thing is my partner is eating the same food and we are losing weight together.

I am getting a transplant surgery very soon and I want my mind, body and emotional health to be the best it can.

The Fight Continues in the War against Scleritis

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My Eyes

I saw my Rheumatologist this morning to discuss the next step in my war against scleritis.  So far I have failed Methotrexate, Cyclophosphamide, Azathioprine and Rituximab.  My doctor reckons that because scleritis is rare not much research has been put into treatments so they are just trying everything until they find something that works.

Ok so the plan is either Infliximab infusions or Humira injections.  Because the treatment is expensive the hospital has to put a plan in to the expensive drug committee stating my case and hopefully they will approve one of them.  The doctor reckons that they will probably go with the infusions because you can give a larger dose at once and you can be more precise with dosing as it goes on bodyweight.  It will be a pain having to have to go to the hospital for infusions but at this stage I need to do everything I can to get rid of this nasty, painful disease before it wrecks my eyesight any more than it already has.  I already have awful vision from the Keratoconus so I really don’t need the scleritis damaging my eyes too.

I am hoping that if the treatment works it will take away the swelling that I have under my eye.  It looks awful like I have been punched in the eye and is from inflammation and the fortnightly steroid injections I have to have.  I often have a black eye after the injections too.  When I am meeting someone for the first time I really hate to look them in the eye because my eye looks so ugly. I find myself looking anywhere but their eyes which can be perceived as rude but I don’t mean it to be I am just a bit embarrassed.

The drug committee only meets once a month so it could be a week or two until I hear anything.  In the meantime I have to stop the Cyclophosphamide at the end of this week as I have been on it for 6 months which is the maximum duration as it is an accumulative dose and I am now up to the maximum dose.  It’s not working any more anyway so there is no point in continuing with it.

I will be glad to be off of the chemo and it’s associated side effects, although I know that the new med will have it’s own set of sides to contend with.

I felt that it was a really positive meeting this morning.  The rheumatologist was great; she really explained things and listened to my questions and concerns.  Let’s hope that this next line of treatment works!

A kerataconus Update

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Topo Left Eye 2008

I have been on Cyclophosphamide now for about 3 months and it was going really well.  Well about 3 weeks ago I had a scleritis flare which was really painful and gave me a week long migraine because all of the eye socket was also inflamed.  I have had 2 orbital floor steroid injections over the last 3 weeks and now i’m sporting a lovely bruise under my right eye.

Anyway I digress, back to kerataconus news.  My doctor said that I desperately need grafts in both eyes but particularly in the left and we have been working to get the left one as healthy as possible before surgery, i.e. getting rid of the scleritis and corneal neovascularisation as much as possible.  If I have the graft with the blood vessels growing into it the transplant will most likely reject and be a disaster (my doctors words).

I saw him on Wednesday and he is now saying that the vision in that eye is so bad due to the blood vessels we may as well do the surgery soon as we have nothing to lose if it fails.  I have no useful vision out of that eye now even with a lens in so I tend to agree with him.  It will make the surgery a bit more complex as he will have to cauterise all of the blood vessels first.  I don’t just have a few blood vessels I have loads and they are really deep and growing into the middle of the cornea.

I am seeing him again in 2 weeks for a review of the scleritis flare so I will try and pin him down to a timescale of when my surgery is likely to be then. They are thinking about increasing my chemo to try and stop the break through flares which may not be fun as I might get increased side effects.  I am prepared to do whatever I need to fix my eyes though.

The pic is a corneal topo of my eye taken probably about 8 years ago, its the only topo I have.  I reckon my eye has changed heaps since then I would love to see an updated one!

Well that’s it for now, I have surgery in my not too distant future which I am very excited about, It will be nice to have an eye with some vision in it as currently I am seeing through a white haze.

Nasty Side Effects of Cyclophoshamide (Endoxan)

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I have been on the Cyclophosphamide for just over 6 weeks and although my eye pain has got a lot better I am getting some horrible side effects.

The first couple of weeks were great, I was like chemo is awesome, haha then it hit me with a vengeance in weeks 3 and 4 with plummeting blood pressure.  One weekend it was so low I couldn’t hardly stand upright without falling over.  Fortunately that one has almost resolved itself.

The latest side that I have hit me in week 6, Myalgia! Omg the muscle pain is all over my body and horrible.  Every single muscle in my body hurts.  My joints hurt too but the muscle pain is worse.  I notice it is a lot worse when I get chilly like when the air-con is a little bit cool at work or in bed in the early hours of the morning.

I am finding it hard to walk up stairs, and going for my daily walk feels impossible at the moment, I feel weak and sore, a bit like an old lady actually.  I had my flu needle at work today and the nurse really hurt me because she pinched my skin together before putting the needle in.  I couldn’t even put my fitbit on this morning because it hurt too much to have it on my wrist.

I hope that this isn’t going to be a long term thing but I kind of suspect it will be. The Endoxan is well and truly in my system so I don’t think I will be feeling better any time soon.

I have to be on it for about another 6 months so joyful times to look forward to!

I guess I need to look at the positives in that it is helping with my eye disease, but when you feel like crap it’s really hard to look at the positives, you just wallow in self pity a bit as the pain takes over.

I am still going to try and do my daily walk, even if it is slower and shorter, I think it be moving will probably help.  I hope so anyway!

 

 

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.