Welcome to our Glaucomarize Blog

Here I will be posting articles, advice and information to help Glaucoma sufferers and their families throughout the world, to gain...

Wednesday, 11 July 2018

DON'T FEEL SO IN THE DARK


We now have a Glaucoma discussion group on Facebook, with new members from all around the world joining daily. This is an online community and resource for patients, relatives, doctors and health professionals to share information and raise awareness about the complicated group of eye diseases known as glaucoma. Don't feel so in the dark or alone ... JOIN TODAY ... 

Thursday, 15 March 2018

POSTER CAMPAIGN @ LONDON STATIONS

WORLD GLAUCOMA WEEK

In celebration of this, we’re proud to announce our poster campaign at major London stations. We are looking for volunteers, fundraisers, supporters and patrons to help us grow and help more people and families affected by this complicated disease. Our poster campaign has been organized and implemented by the amazing Shem Booth-Spain and Admedia; getting right behind us with their help and support. Much gratitude to them. Our posters have been placed at King’s Cross, London Bridge, Euston, Cannon Street, Charing Cross, Liverpool Street, Paddington and Victoria. 

Tuesday, 14 November 2017

AT THE CENTRE OF IT ALL - YOUR EYES

A post by Niki's husband and partner - Singer/Songwriter/Poet & Designer Jayl - explaining how the logo for Glaucomarize was designed with Niki's eye at the centre. This is the eye that Niki lost her sight in. This also links with Jayl's famous song of love - "The Wedding Song (Today is the Day)" where once again, Niki's eye is at the centre of the CD design. The lyric - "At the centre of it all - your eyes" is taken from David Bowie's final mystical and seminal masterpiece - "Black Star". The eye photo is taken from a classic Mike Walter shot, as Niki has done many professional modelling shoots in connection with Jayl's music and art and the Harmony Label. Click on the picture below to see and read more ...

 Click on picture to go to WeddingSong.Today and see more.

Monday, 17 July 2017

DECEPTION OF PERCEPTION

Dimension is low – no 3D glow,
Illusions of vision – perception is different.
That stranger is too close; I need to feel some space,
My brain feels too busy, longing for my own pace.

Seeing the world through strange vision and colour,
For some there is black, for some there is blue.
How special we are, never doubt yourself now,
Always be true to you.

Something maybe closer than it looks,
These facts are not written in the books.
Find out for ourselves with frustration and pain,
But be kind to yourself and your dignity will remain.

Shades of light are too dark then too bright,
The mirror is too close and the heat burns my eyes.
But don’t be fooled though; I am still cool,
And I am still smart and wise.
You know my faith is as strong as the vast blue skies.

Niki De Lara – July 2017 💗                                               

Friday, 7 July 2017

FEELING GOOD (Beauty & Cosmetics)

For those who love their make up (like myself), it’s been a long journey since my diagnosis and operations to finding a product that I can wear on my eyes for even just 2 hours. Firstly, I found this strange as I’m one of these ladies who just loves beauty products. I didn’t wear any make up on my eyes for 2 years after my first eye operation. Not leading up to the op either, as I was using 4 different eye drops all day. I struggle with applying eye make-up now as I’m blind in my right eye so I can’t see to apply it properly to my left eye! 😨 This was a miserable realisation! 😒Add that to not knowing what to apply or how to take it off ended up in nothing at all.
So I just concentrated on lipsticks and nails and blushers. I always wear dark prescription sunglasses everywhere so it didn’t seem to matter anymore. All the eye make-up went in the bin and I avoided even looking at it in shops. Many people have told me my eyes are beautiful without make-up and I began to tell myself that too.
Time went on and I started to research which brands there could be a possibility of using. I’d given my eyes a rest, so I thought maybe time to experiment using my patience. With some help from a few good friends and a few support group conversations over the topic, I discovered that pure coconut oil was the best eye make-up remover and it really IS.
I researched into vegan eye make-up, chemical free, organic eye make-up, sensitive eyes and was pleased to discover that I could now wear for a couple of hours “Almay” mascara and eye shadow by “Pacifica” which I discovered on an excellent website called “Love Lula”.❤ This eye shadow is made from natural minerals and is formulated without talc, parabens, petroleum, etc. 😐 😱 It was a delight when I had the “me” time to apply these. I could keep them on for about 2 hours. Very pleased with the results. It’s only saved for special occasions and my day to day is my dark glasses and one of my many lipsticks. But it felt great finding that freedom after having to make such drastic changes.
Never doubt yourself by sudden limitations placed before you. Always try try try with all your strength and faith to make the best of everything you have in the most positive way you can. We are all individuals but sometimes we need a little help and guidance and I hope I’ve given you some inspiration here.

Niki De Lara – July 2017 💗


Thursday, 6 July 2017

STAYING HEALTHY (Physical & Spiritual)

Strength and Self-Esteem
One of the things that having glaucoma with sight loss has given me is strength. To have been able to get through what I have, I have discovered a strength and faith I never knew I had. There are many questions I ask only myself in my brain; indeed, some negative, but I don’t beat myself up over them! For what will be will be and we cannot go back in time. It’s only natural to suddenly question everything. I’m not ashamed to say that when I was told I would need an operation on my right eye one of my first thoughts and questions was “Will I look different?” 👾
This is because I’ve always taken care of my appearance. I’ve always enjoyed the vast beauty products we have such a great choice of. I’ve been fortunate enough to have done some modelling with great photographers with a lot of photos with healthy made up eyes. 👀
So I’ve done the best I possibly can to maintain self-esteem, a beauty regime and taking supplements to keep healthy and feeling good.

I’ve listed a few things here which I hope will help any of you with taking care of yourself and your personal self-esteem, which is essential for good health. I just wish to share a few things that have helped me.

The one way to make having this disease positive is to help others. 💗

1) Keep your eyes as healthy as you possibly can with the help of: -
  • Fresh air.
  • Adequate rest and sleep.
  • Limiting time on computers and watching TV (this can be frustrating!) 😡
  • Close your eyes and listen to music that you love. 🎶 Proper eye rest! 😏
  •  A good healthy diet with lots of fresh food and vitamin supplements,(wherever possible).
  • Moderate exercise regularly.
  • Meditation and relaxation to alleviate worry, anxiety and stress.
Stress is actually one of the common causes of eye pressure rise, if the eyes are already weak. 😠 It’s very easy in this busy world to never stop or rest, but the immune system can be easily weakened, so it’s important to keep as healthy as your time and budget allow and to try to keep nasty viruses away: for example bad colds & flu, shingles and conjunctivitis. 😢

2) Keep out of very bright sunlight and always wear dark glasses. 😎 Avoid very bright glare and strange lighting.

3) Try not to deliberately challenge yourself, or let anyone else challenge you! 😓. Keep things simple and easy. We all know our limits inside but tend to ignore them, but avoid pushing yourself too hard which can lead to exhaustion, headaches, depression. So try to not push yourself too hard. Don’t be scared to let others know this too. Be true to yourself. 😉

4) De-clutter!!! ☺😲 With limited vision and a medicine regime with tiredness, sometimes looking for something at home can turn into a negative drama! 😒 Allow extra time when getting ready to go out, so that you can be relaxed. I’ve found that rushing now sends me into a panic and, focus quickly goes wrong. 😨 It’s simpler to just allow more time. Try to have homes for everything, (especially ladies in your handbag! 👜 😉) Always make sure important things are easy to find, for example eye drops, house keys. Just these little adjustments can make a day brighter and happier with less frustration. It will soon become a way of life.

5) One of the most difficult issues: dealing with eye pain, migraines and headaches.  Even with a nice healthy lifestyle we all know that migraines and headaches go hand in hand with glaucoma. 😡 As well as prescribed pain relief I’ve had great positive results with the help of:-
  • "Kool ‘n Soothe” forehead masks. They are bliss! They last up to 6 hours and it’s a great feeling when one is placed on the forehead!
  •  Lavender oil is a wonderful soother for painful heads and also helps with sleep.
  • Increase of magnesium is the diet (best example is 4 Brazil nuts daily).
  • Drink lots and lots of water, especially at the onset of a migraine.
  • Peppermint or ginger tea helps to soothe the digestive system, which does somersaults during migraines!
  • Super foods for glaucoma sufferers include sweet potatoes, blueberries, carrots, eggs, nuts and yellow peppers.
  • Take time out! 😥
6) When you look in the mirror, however you may feel and even on a ‘bad’ day; a few kind words to yourself can change your day. Positive affirmations really do work! 😄 Try to talk to yourself positively, “my eyes are beautiful”, “my eyes work hard!” 😎 “I am strong!” 🗽 Even if you don’t feel it, the good vibrations of those words will spread.

The strength involved in dealing with glaucoma makes us all very strong individuals!! Please remember this! Be kind to yourself. Stay calm. 😔 Operations, medicines and vision loss does not lessen the power and beauty of our eyes. Our eyes are all individual and beautiful. The calmer the mind, the more positive effects on the body. The optic nerve is part of our nervous system and brain, so try your best at all times to stay free from stressful situations and people. Smiles and a cheerful disposition work wonders! They have an uncanny way of reacting positively upon us. ☺ 

Niki De Lara – July 2017 💗


STAYING HEALTHY (Mental & Emotional)

I’ve thought long and hard about important issues that have helped me on any given day, which I would like to share. I know that when diagnosed, the challenges that one has to face daily can bring on a real feeling of loneliness. 😩 So if by sharing my experiences manages to help anyone who is reading; well that is one reason enough for starting this charity and website. ☺😎🌈
Why Me?

One of the most important issues is to always do your best to keep yourself full with as much positivity as you can. It’s very easy to ask questions to yourself as to: -

Why me? 😨

Why do I have to change my life so drastically? 😢

Why is everything now completely frustrating? 😠

Not to mention a feeling of total fear of the future. 😨

Moreover, the side effects from the eye drops which are needed to control pressure can often have a very negative effect on the mind and body. 😪 It’s wise to try to stay as healthy as you possibly can and to always think about what you have, rather than what you no longer have. Just a shift in thinking. Not easy at all, but well worth practising. Counting your blessings (in old –fashioned terms so to speak). It has made such a difference to my happiness and life.

Be Positive – You’re Not Alone

And you’re not alone! 😎

There are millions of us suffering with glaucoma in varying degrees and in one form or another. We can be there to support each other. ☺☺☺ I found it best in the end, to talk of my condition to family and friends. It can be a very lonely place keeping the emotions surrounding this disease within yourself. Not to go looking for sympathy; but if only to express the sudden changes in one’s life and the reasons why; what glaucoma actually is and also to not feel ashamed in any way. 👀
Glaucoma can eat into your soul on a bad day, causing confusion, balance issues, eye pain and depression; along with side effects from the medicines. 😵 Just take some time out and really be kind to yourself and look after “you”. 😍

“You’ve just got to get on with it!”

Of course glaucoma can be incredibly tough and it’s very easy to feel sorry for oneself. 😪 But I have found it better to remain cheerful and think positive. ☺😎 My own dear Mum is 90 years old and lived through the war. Even now; although in a care home, suffering from Alzheimer’s, limited mobility and many difficult challenges associated with great age, she just says “Well you’ve just got to get on with it!” Just like she did in the war and throughout her life. I find this an inspiration and strive to apply this philosophy every day. ☺ 

Niki De Lara – July 2017 💗



Sunday, 18 June 2017

NIKI'S STORY

My story; eyes 👀

Introduction

I believe that whatever curves life throws at us, one must always make the best out of a situation; there is always a positive side! After my experiences with uveitis, glaucoma, operations, sight loss, medicine routines and changing ways of life I can only use all this to make the way forward positive. ☺
This is the reason for Glaucomarize. 😎
I would like it to reach as many people as possible, to help others on a bad day, just the feeling of knowing we aren’t alone can bring a massive change in outlook. I’ve had a lot of friendly support from various glaucoma groups; that alone helped me in knowing I’m not alone. 😉 Every person’s experience is different, mine started with uveitis in my right eye. (Uveitis is inflammation of the uvea — the middle layer of the eye that consists of the iris, cilary body and choroid. There are many potential causes for this condition, many of which are hard to identify.) However, I hope that by sharing my story, it will help to give faith, insight and courage to many.

Uveitis

I was 32 and that was the first time. I had never heard of uveitis. It was painful and I was put on a course of drops which cleared it up. It was in my weaker very short sighted eye. Quite a few more episodes happened over the next few years; I had more drops, pills which worked quickly, always had regular eye tests and pressure tests, but uveitis seemed to be my weak point. I felt it was always related to my immune system, but then not always as I had attacks when I was feeling completely healthy.
Each time it appeared the steroid drops cleared it away. I was so used to being able to clear it up, or have drops to bring down elevated eye pressure, that it was all a shock when I was in my 40’s and suddenly faced with this being more serious. Over time, I had taken a lot of steroids and medicines and this was in my eye that always had such limited vision, (it had always been my ‘bad’ eye since I was 11.) Meanwhile, I didn’t realize that these problems were causing the cells to die in my optic nerve (glaucoma) and they were continuing to slowly die even when taking medicines.😠 Information was limited – hence another reason to create more awareness about this disease.

Glaucoma and the loss of my sight in one eye

In early 2014, I was sitting in the familiar eye checking waiting to be prescribed the usual medicines to help again, when suddenly I heard the word 😨 “operation” – ‘alien’ talk 😩 My words were “but I always have these drops – all goes back to normal then!”
I had been experiencing pain; I had an attack of uveitis. I had the ‘usual’ blurry, cloudy, watery vision. I had been using the regular “pred forte” steroid eye drop for the inflammation. I was also taking “carbonic anhydrase” which suppress fluid production and miotics to help with the drainage. However, one side effect is that they constrict the pupil, which makes it difficult to see. I did realize that things were not improving, but I also thought that there would be some different eye drops or pills to help. I still knew very little about glaucoma – I was only actually familiar with uveitis. My vision had become extremely poor in my right eye. I was experiencing pain and blurred vision and using my ‘good’ left eye much more to see everything. Because of the uveitis, the miotics constricting the pupil and the fact that the cells in my optic nerve were dying so fast, I didn’t realize I was actually fast going blind in my right eye.
This is where glaucoma is not just “black or white”. It cannot be put into a box where all the symptoms make sense. 😡 It was a massive shock to myself and my husband on the day we were told there was little left of the optic nerve in my right eye and that there was actually no way out of this. Looking back I can see that I had experienced many years of problems with this eye, had large amount of various strong eye drops over the years and a build-up of scar tissue had formed. This would have caused serious drainage problems. 😢

My Trabeculectomy

Whilst it was too late to save the sight in my right eye, I was booked in to Cheltenham General for an operation called a trabeculectomy; to sort out the drainage channels and make sure pressure couldn’t build-up in the eye anymore. By the time of the operation (which was scheduled in very quickly), I only had “light perception” left in the eye. Here is when the cells just continue to die once they have started. It’s difficult to describe – black with strange glare. 😎😡 By the time I could no longer see from my right eye – strangely enough I was used to it. Very deceptive. But I could cope. I always do.
When I was introduced to my glaucoma surgeon - Mr.Nitin Anand MBBS, MD (Ophth), FRCSEd, FRCOphth, I knew in my soul I would be fine. Just one of those things where I knew I was being looked after. He immediately instilled faith and conveyed calmness and confidence into me over what would be happening. I looked after myself well before the operation and it was now a way of life only having “light perception” in my bad eye. I had the best, loving support from my husband, my beloved cat and my faith. I had a general anaesthetic and the operation went well. I was looked after extremely well and my surgeon explained everything thoroughly. I still had my ‘good’ left eye and was filled with gratitude that I could still see. The aftercare was also excellent.
I had plenty of recovery time and thankfully the eye looked Ok. I was totally relieved, but glare hurt and still does; hence I wear my dark prescription glasses LOTS 😎 I’m sure many of you know what I’m speaking of! Accidently bumping into people, spilling drinks, not seeing things on the floor etc.😠😉 But I strongly believe if you can start the day with a smile and not complain then you have far more chance of coping with such things. Of course, many aspects of my life had to change. But with faith, patience, time and loving support I have realised I am OK. I just always need to be patient with myself.

Saving my eyesight - my deep sclerectomy

My ‘good’ left eye had always been fine, although it was now doing far more work now. But one year after my trabeculectomy operation, I developed severe blurriness in my good eye. I had been suffering with a bad cold that wouldn’t shift. With this eye being the only sight I had, I became very disorientated and scared. Now this eye was suddenly troubled with uveitis and high pressure. Sometimes a long standing problem can suddenly affect another part of the body; but I knew something was very wrong. I had an emergency appointment to see my surgeon the day I phoned the hospital. As always, Mr.Anand was very calm, but the situation was very urgent as my intraocular pressure was off the scale at 80! When he said this I tried to hold my nerve as good as I could. 😩 He asked me if I had eaten, gave me 2 big pills and I had to wait 20 minutes. In that time I walked to the pharmacy at the hospital to get the long list of medicines.  More than I had ever taken! As 10 minutes had passed I began to feel a little better, the tablets were working and I could feel my eye becoming less blurred, I felt less sickness and pain.
My surgeon Nitin Anand was an angel that day (again 😇). He booked me in to have a deep sclerectomy which is a relatively new procedure and less intrusive than a trabeculectomy. I had to wait a few weeks but I was checked regularly and on a strict eye drop routine. I had a big bag of various drops that I had to put in every hour, the side effects were awful in some. 😢😩😠 But my eye pressure went back down to 21. It was a very scary time, but again with massive support from my husband, my surgeon, my beloved cat and my faith, I got through it.
The deep sclerectomy went well. Mr.Anand performed it with great skill and expertise. My vision took 6 weeks to come back properly, so I had a very blurry and challenging time. But the sight in my good eye had been saved. It really felt like a true miracle! My cat was a huge comfort; she always knew when something was wrong and she cuddled up with me after I got home. I must say my faith strengthened even more in those 6 weeks. If you love animals they can help enormously with relaxing and healing therapy.

Gratitude and Faith

I still use steroid drops occasionally and another drop which is a lifesaver called “hylo tears” – recommend by my surgeon. I’m so very fortunate to be able to see each day. After those few hours that March day in 2015 when my pressure was off the scale and I was possibly hours from total blindness, I have learnt to never take anything for granted. To smile even if you don’t feel like smiling. To be thankful for all I have each and every day. 🌈 To look after myself better and be thankful for who I am. I wake up each morning with gratitude that I can see the beautiful world🌛🌹 and those I love. The realisation of health being the most important thing is now so true to me. There is no time to use wasted energy on negative things or worry. Things can turn out good with faith, trust and a smile.
I am truly blessed as my husband is now ‘My head of security’ wherever I go. We have been fortunate enough to spend a lot of time now by the coast. The fresh sea air is so much better for my eyes. Less irritations compared to the pollution inland.
I am sure many who read this can relate to my situation in some way 😎😨😢 and although I realize everyone’s experience is different and individual, I really hope my story and this blog and website helps other glaucoma sufferers.
May God Bless you all and always remember to keep faith over all of the difficult eye situations and frustrating eye days. 👀👀👀👀❤😎

Never give up!

Niki De Lara – June 2017 💗

 

Friday, 2 June 2017

Welcome to our Glaucomarize Blog


Here I will be posting articles, advice and information to help Glaucoma sufferers and their families throughout the world, to gain insight and understanding about this life-changing and complicated disease. This blog is connected to our website - www.glaucomarize.org

Please feel free to contribute or contact us at any time.

Many Thanks
Niki De Lara