Been thinking about all things health orientated, so decided to review my situation.Started with having constant pain in spine (mainly) doc after doc could find nothing wrong, until they basically said it was all in my head. Eventually diagnosed with ankylosing spodylitis. By this time there was severe damage which was why it was spotted on the x-ray-the vertebrae fuse together and cause bending forward which in turn causes neck pain among others. By this time I was married and in early 20's. One of the things I was told at this time was that unless I could not live with out children this idea should be given up as my spine was not strong enough.This went on for several years, taking painkillers and anti inflammatory. Then one day had a strange eye, went to see GP, nothing to be seen, but 2 nights later he appeared at the house in his can and dragged me off to the eye hospital where I stayed for 1 week. A side affect of the AS, I had developed iritis (uveitus), and as it had not been treated caused a few problems, in fact had to be injected into the eyeball as the drops did not work. From then on I had iritis on average 3-4 times a year, just had go straight to the eye hospital as speed was important. Only had injections twice more and 2 other stays in hospital. Got to be very good at recognising the signs I have had a few arguments with nursing staff who would insist there was no iritis, but when I insisted on seeing the doc, it would be confirmed. In over 30 years now have only been wrong once! They should by now read the bloody notes and listen to me. I react badly to the drops, unfortunately, and it causes the pressure to build up in the eye - this can turn into glaucoma. My eyes are now very sensitive to light and I have lost some vision at the periphery of 1 eye, and will most likely need surgery at some point. Go to the eye hospital every few months for check ups, but can go anytime I have a concern.A few years after the AS was diagnosed, at New Year, I fell on the ice, and landed on my back, I was carried home by a doctor and fireman who lived nearby and put to bed by my neighbour, a nurse. However in the morning in a great deal of pain, so went to A&E. It was chaos, being that time of year, and I was treated as a nuisance by the nurses. However, after x-ray, it was discovered a vertebrae had smashed. They tried to keep me in, but the only bed was in a ward full of elderly people moaning-as the only treatment was bed rest, I was discharged. That was the first time. Second time was a few years later when someone pulled out a chair as I was about to sit on it. I was told later that because I was not screaming and crying when I saw my GP, they decided it could only be bruised, however when I went to see my consultant at the Northern Hospital he took one look at my face as I walked in and sent me immediately to x-ray - break no 2. To stay on the same subject the 3rd time was 5 years ago, hoovering and bent down to pick up a bit fluff and heard a crack - same old same old - pulled muscle, torn ligament etc so sent me to a physio - interesting journey crouched in the back of a taxi-you have no idea the number of potholes in Edinburgh!! Anyway they sent me home and made arrangement for an x-ray. They also insisted that they would come to me till they were satisfied with my situation. They also instigated further investigations which eventually confirmed I also the old bones had gone and had osteoporosis. This combined with the AS means I have to be very careful of falling over etc.In the meantime discovered a hiatus hernia and underactive thyroid. The thyroid and AS both have as a side effect, fatigue, that explained my continual exhaustion. They also discovered that I had a lot of irritation in my tum and guts due to the years taking anti inflammatory, and I was anaemic. Again, fatigue. So could only take painkillers, which really don’t so it for the pain. However a few years ago I read about a very new injection which had been used for similar conditions so spoke to my consultant at the Western - I qualified- so started with initially twice weekly self injection, the dosage was double so it could be once a week.However the anaemia was becoming a problem and I have been rushed in several time for emergency blood transfusions - the average count is 120-150 for a woman, once I was 50.In fact it caused a heart murmur because of the all the extra work my heart was having to do. This was also a problem as after going to GP with a list of my symptoms, including breathlessness, dizziness, exhaustion, heart thumping, the first GP sent me home with stress. When I went back a different GP immediately gave me a blood test. By 5 that evening I got a phone call telling to get to the WGH immediately and to take an overnight bag. When chatting to the doc there I told him why it had taken so long to get to the stage of getting a blood test, he asked to see my list-as I had typed it out, I had taken a copy – he read it through and said that if any doc on his ward had not immediately taken a blood test with this list he would get rid of them – he went on to ask if he could keep it as a training tool.
This is currently being investigated, and a few weeks ago, after several endoscopies, in both directions, got the camera pill to swallow, still awaiting the results.In December 1999 they decided to operate on my back as I was becoming very badly bent over-this meant opening me up shoulder to bum, breaking the spine in a couple of places, placing metal rods at each side of the spine and hooks to pull everything into alignment. The op was on the Tues and the put me in plaster on the Friday - should have been longer before the plaster but it was coming up to Christmas. That was the worst thing ever. If you can imagine, I had to sit up being held by several people, I was in huge pain and dizzy, while they placed the big padded stuff round me from under arms but going up to bottom of throat, and down to my hips. The doc ran round with injections of morphine giving me an injection whenever I wanted one. The there was scaffolding I was carried over and laid on this structure, with pipes running under my ankles, knees and under arms, to leave the section to be plastered clear but all the rest supported and being pulled straight-there were material bonds round my neck pulling my head into place. When they were done, carried back and sat up as they had to make sure the plaster wouldn't be too high to choke me, or too low so I couldn't sit properly. The laid down and sent to x-ray to make sure everything was in the right place. I was put on a morphine drip. I was in hospital for a month.
That was an interesting stay, with various problems. I complained that the arm with the drip felt funny and I was in considerable pain. They turned up the flow of morphine, eventually I lost all feeling in the arm and it became very swollen – the morphine was going straight into the muscle!!! Had to learn to walk, to get washed with wetting the plaster etc etc. After a few weeks had to go back to hospital as there was a black discharge, turned out because the plaster went on too early there was an infection, the took the plaster off, but I had to remain plaster less for a week and had to say on the bed and in the wee room I was in as I couldn’t be moved. No further problems, but I had 2 further changes of plaster, each one a little lighter than the last, over 20 months. Then I was fitted with leather an metal strap on body brace, which was bliss as I could take it off at night. That was used for another year.
So between the painkillers, the injections, thyroid pills, hernia pills, iron pills, calcium pills, osteo pills, eye drops, I get a shopping full with each prescription, luckily as I have thyroid medication I don’t pay for any prescriptions!.
There has been the almost inevitable depression at times, mixed with loss of confidence caused by the way I look (now very bent over again) and the feeling of being such a nuisance – cant walk far or for long, don’t want to go out much as if in a pub e.g. need to have a seat etc, so no longer have a social life. What I do have is people visiting me – which also is difficult – see moaning blog.
Well enough for now, need a drink now I think!!