I am lucky enough to work for a big Publisher and their response to my sight loss has been absolutely corking. Their efforts on my behalf have enabled me to continue with the job I love and I am so grateful. My eye is finding some sort of level. A couple of weeks ago it had been so consistently painful that I all but begged the Consultant to take it out - but with some tweaking of drugs, I am now doing much better. Most people with this level of Neovascular Glaucoma eventually lose the eye and I suspect that the Doctors keep going in their attempts to keep the pain under control partly in order to allow the patient to get their head around the end stage situation. My eye is trashed. There is no possibility of it ever functioning as a sighted eye again - they keep gently reiterating this to me as if I have not taken that information on board. Somewhere my pragmatism is being lost in translation. I'm not 25, or a model. I have the happiest marriage, which as my husband has always worked in bomb disposal/mine clearance has always included the understanding that our abiding love would survive any loss of body parts! It's kind of ironic that it looks like it'll be mine rather than his, but I truly don't have a problem with it. It's useless and it's trouble, a whole lot more trouble than a prosthetic would be, so bring it on I say.
Steve's organisation is thriving under his charge. His dynamism has energised the situation and has meant new funding from the UN and from several more Governments, which has translated to more projects world-wide - huge landmine clearance, victim assistance, armed violence monitoring projects, training local populations.....I am so monumentally proud of him. I was talking to my Mum the other day and in the course of the conversation said 'Frankly Ma, I am in awe of him, is that weird?' to which she replied ' No darling, we all are - he's an incredible man'. I have high self esteem (thanks to great parenting and a great husband) and it's not that I think that I don't deserve him - but I am so very honoured to be loved by him. Theoretically, we are not a match. He is sporty, academic, brilliant, funny, fair, courageous, tall, slim and beautiful. I am none too bright, ridiculously short, inclined to eat cake rather than exercise, given to making random ill informed judgements, and not very interested in the world beyond my own little universe, but work on every level, it does. We would never have been matched by one of those dating sites that are always advertising on TV as successful because ' we take care to match you with someone who shares your interests'. That always strikes me as so simplistic. It's chemistry isn't it? Actually, maybe it's chemistry and shared values. We may have different tastes but from day one we both knew that we were right for each other. We both get involved, step in, defend the small the weak and the disadvantaged, love good manners and kindness and abhor cruelty and prejudice. He has a highly developed sense of humour and I am inclined to be serious but we have an identical take on what is ridiculous and often catch each other's eye and grin in social situations because we have found the same thing barking. I didn't mean to write what I can see might come across as a rather smug love letter to Steve but my excuse is that I think it's possibly rather cool to be so wild about someone after so many years.
Showing posts with label Glaucoma. Show all posts
Showing posts with label Glaucoma. Show all posts
Glaucoma update
Nobody wants to read the ins and outs of someone elses medical dramas, so, I'll keep this really short. I'm okay - thank you for caring. The Glaucoma was caused by the previous radiotherapy. The pressure can (and is being) reduced by drugs, but the sight is gone forever and it's a chronic condition which will require management for ever. It's a pain but I thnk my lucky stars that I live in the first World and have access to the best Doctors and all the drugs & treatment I need is free (God bless the NHS), so... chin up, stiff upper lip in place..... and on we go!
Just be aware( those with CM and or TED) that closed angle Glaucoma is a possibility and if you have a bad headache, nausea, see haloes around lights, your eye is red and irritated, or any combination of those symptoms, do NOT do as I did and consult junior Doctors & GP's - it's rare and they don't know what they are looking at - head STRAIGHT for an eye consultant without passing 'Go!'
Just be aware( those with CM and or TED) that closed angle Glaucoma is a possibility and if you have a bad headache, nausea, see haloes around lights, your eye is red and irritated, or any combination of those symptoms, do NOT do as I did and consult junior Doctors & GP's - it's rare and they don't know what they are looking at - head STRAIGHT for an eye consultant without passing 'Go!'
Trouble...
Well, there's been trouble....
No sooner had my Darling recovered from his illness than I was struck with dreadful headaches. I'm not the kind of woman who gets headaches and as they intensified we became anxious and went to the local hospital. The young Doctor there was pretty convinced that I had developed something called 'cluster headaches' but during testing threw a load of drugs in my (red and swollen and previously (as in 15 years ago) irradiated and therefore blind)) eye. We retreated home laden with half a dozen drugs, including antibiotics for my eye. The situation worsened and we went back to the hospital a few days later where a second Doctor agreed with the original diagnosis and prescribed more of the same drugs.
That weekend we were due to leave for a long planned family holiday in the West country. When I say 'family' I mean my entire family - parents, cousins, aunts, uncles, kids and dogs. By this time I looked terrible as well as feeling it. Facing the dilemma of whether not to go - thereby alarming everyone and meaning that my beloved girls would feel that they shouldn't go, we loaded the car and headed down. I patched my 'bad' eye and made a fist of it but had to spend much of the time in that beautiful place lying down in the dark. There was deep concern amongst my family. We cut our holiday short and headed back. The following morning I walked into my GP's office. Within moments he had arranged for me to see a Consultant at the eye hospital. I'm not a fan of eye hospitals. Fifteen years ago I was treated for eye cancer. It's rare and the kind of treatment I had for it is even rarer. Most physicians - including the vast majority of very senior eye Doctors have never seen an eye like mine and this results in some barely concealed excitement when they get me in front of them, followed by extensive tests and a queue of students 'having a look'. I don't mean to sound churlish and I absolutely know that intensely studying me could only have benefits for any future case they may come across, but hours of feeling like a Lab rat and anxiety about what they may discover, always leaves my spirit low, so I am ashamed to say that I argued with my lovely GP; 'Look Dr. C, I've seen two Doctors at the hospital, it's my head affecting my eye, not the other way around!'.
Wrong!
My beloved dragged his grumpy, muttering wife to the eye hospital and within half an hour the Consultant explained that I have something called 'closed angle Glaucoma'. It had been missed because most of the indicators required for diagnosis, require the patient to report blurred vision and seeing haloes around lights - my eye, is blind. That I had been instructed to shovel antibiotic drops into my eye and had had my pupil dilated by Dr. no.1 had exacerbated the situation. Had I been sighted, heroic measures would have been taken immediately in order to save my sight, as it was, there being no sight to save, reducing the pressure and therefore the pain was started immediately and I am so grateful to say, that after two weeks of intense pain, within hours I felt MUCH better.
Back home, this time with the right drugs and with instructions to return this week, my relief has turned to worry. The Consultant had explained that the cause of the raised pressure in my eye would need to be investigated and that growth of the tumour was a possibility. I am trying not to panic. My eye was closely inspected by an Occular Oncologist a year ago and was pronounced 'fine'. Did I have cluster headaches and that early treatment sparked the pressure to rise in my eye? Had something else raised the pressure? or is the tumour on the march? I'll find out on Wednesday.
I'm sorry to post this. Hardly cheerful reading is it? but writing it down serves to clarify to myself what has been a very weird situation. I wish you good health!
No sooner had my Darling recovered from his illness than I was struck with dreadful headaches. I'm not the kind of woman who gets headaches and as they intensified we became anxious and went to the local hospital. The young Doctor there was pretty convinced that I had developed something called 'cluster headaches' but during testing threw a load of drugs in my (red and swollen and previously (as in 15 years ago) irradiated and therefore blind)) eye. We retreated home laden with half a dozen drugs, including antibiotics for my eye. The situation worsened and we went back to the hospital a few days later where a second Doctor agreed with the original diagnosis and prescribed more of the same drugs.
That weekend we were due to leave for a long planned family holiday in the West country. When I say 'family' I mean my entire family - parents, cousins, aunts, uncles, kids and dogs. By this time I looked terrible as well as feeling it. Facing the dilemma of whether not to go - thereby alarming everyone and meaning that my beloved girls would feel that they shouldn't go, we loaded the car and headed down. I patched my 'bad' eye and made a fist of it but had to spend much of the time in that beautiful place lying down in the dark. There was deep concern amongst my family. We cut our holiday short and headed back. The following morning I walked into my GP's office. Within moments he had arranged for me to see a Consultant at the eye hospital. I'm not a fan of eye hospitals. Fifteen years ago I was treated for eye cancer. It's rare and the kind of treatment I had for it is even rarer. Most physicians - including the vast majority of very senior eye Doctors have never seen an eye like mine and this results in some barely concealed excitement when they get me in front of them, followed by extensive tests and a queue of students 'having a look'. I don't mean to sound churlish and I absolutely know that intensely studying me could only have benefits for any future case they may come across, but hours of feeling like a Lab rat and anxiety about what they may discover, always leaves my spirit low, so I am ashamed to say that I argued with my lovely GP; 'Look Dr. C, I've seen two Doctors at the hospital, it's my head affecting my eye, not the other way around!'.
Wrong!
My beloved dragged his grumpy, muttering wife to the eye hospital and within half an hour the Consultant explained that I have something called 'closed angle Glaucoma'. It had been missed because most of the indicators required for diagnosis, require the patient to report blurred vision and seeing haloes around lights - my eye, is blind. That I had been instructed to shovel antibiotic drops into my eye and had had my pupil dilated by Dr. no.1 had exacerbated the situation. Had I been sighted, heroic measures would have been taken immediately in order to save my sight, as it was, there being no sight to save, reducing the pressure and therefore the pain was started immediately and I am so grateful to say, that after two weeks of intense pain, within hours I felt MUCH better.
Back home, this time with the right drugs and with instructions to return this week, my relief has turned to worry. The Consultant had explained that the cause of the raised pressure in my eye would need to be investigated and that growth of the tumour was a possibility. I am trying not to panic. My eye was closely inspected by an Occular Oncologist a year ago and was pronounced 'fine'. Did I have cluster headaches and that early treatment sparked the pressure to rise in my eye? Had something else raised the pressure? or is the tumour on the march? I'll find out on Wednesday.
I'm sorry to post this. Hardly cheerful reading is it? but writing it down serves to clarify to myself what has been a very weird situation. I wish you good health!
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