Too Much Carrot and Not Enough Potato

Too Much Carrot and Not Enough Potato

An Experience of Auto Immune Diseases in Youth

 I lifted the lid on the hospital dinner. The smell was nauseating and yet familiar. It was the same smell as I smelled nearly 31 years ago at the age of four when I came out of a diabetic coma. Today I am in the same hospital but my IV is not filled with insulin. It has a drug called RoActemra in it (tocilizumab is the generic name, but too hard to pronounce when you’re asked what medication you’re taking). This drug is for rheumatoid arthritis, if that’s what I have. They don’t really know. All I know is at the age of about 15 I started falling asleep in class. Some of my teachers did amusing impressions, but my grades were good so they assumed I was just working too hard, or that it had something to do with my diabetes. Then one morning I woke up with an agonising pain in my neck. I had to lift my head with my hands in order to get out of bed. I had just got a new bed, which was blamed. But the pain never went away. Sometimes I used to faint because of the severity of it. My GP said I was too young to have a rheumatological condition. The physiotherapist said ‘it’s bad posture has done this’. Bad posture doesn’t cause vertebrae in your neck to fuse together. Bad posture doesn’t cause the cartilage in your knee to wear away so that bone sits on bone. Bad posture doesn’t cause anaemia or high platelet counts. Bad posture just means, ‘You brought this on yourself. Why should we help you?’.

 My acquaintance with autoimmune disease (and medical insouciance) had begun long, long before the pain set in. At the age of three I had whooping cough, and after that I had repeated kidney infections, or at least my mother kept being told I had repeated kidney infections and I was certainly prescribed endless courses of antibiotics. My Auntie Adeline, dad’s sister, had type 1 diabetes as did Mum’s cousin so my other insisted I be tested. She was told not to be over-anxious and it was written in my notes that she was over protective. I know this is so because I have just read it in my voluminous notes left on the desk by the registrar with the words ‘not to be handled by patient’ in large, bold type on the cover. Sod that, quite frankly. So they didn’t work out I was diabetic until I fell into a diabetic coma. I had a near death experience and everything. Changed my whole life in that the NDE put me on a spiritual path I might not otherwise have found. Then I opened my eyes and Mum was on a big leather chair in a hospital room beside me. ‘Oh, Eve, you’re awake’ she said. I didn’t know she’d been sleeping on that chair for days. I knew I was in hospital but I wasn’t at all frightened because Mum didn’t seem to be, and God was looking after me. I couldn’t move but it didn’t worry me. I felt terribly peaceful. A doctor came and shone a light in my eyes. A few days later another doctor explained to me that I would need injections every day for the rest of my life. She seemed worried about telling me this, but my repose was ‘Ok’. After all, I was four years old. The whole of the world was pretty new to me. This was just another new thing. Everybody has something that makes them special or different. This was just going to be my ‘special’ thing. Unfortunately but totally understandably, this wasn’t exactly how my parents felt about it. The thing I hated most, the only thing I was at all concerned about, was if I would have to eat the same horrible food at home as I got in hospital, like stew that was all carrot and no potato with chewy chunks of unidentifiable meat.

 

Diabetes care was very different back then. Insulin came from pigs and was injected in glass syringes. If patients had high blood sugars, the common practice was to shout at them. I was late in starting school because of the repeated infections that came as my diabetes was not yet under control (when diagnosed my blood sugar was 46 mmol/L. A normal reading would be about 4 mmol/L.  Pretty lucky I didn’t die... but that was because of lack of insulin, not because of eating too much sugar. People don’t understand this). It would be fair to say the school were clueless about the whole thing. They contacted social services because of my frequent absences. My parents were both social workers themselves and they were pretty chagrined about it. The social worker when she saw me said ‘this is ridiculous. Anybody can see this child is very sick’.

 

But I don’t remember feeling very sick. Well, I do remember being covered in itchy spots of various descriptions. And I remember having a hypo (low blood sugar) which on the old pig insulin meant having a terrible headache, and my grandmother telling me that children don’t get headaches. Then my Papa put me in the car and drove me home, and I opened my eyes hours later to find him sitting beside me in the car. He’d just sat there and let me sleep. He was very frightened by my illness – he gave what might be 20 years’ salary to most people to diabetes research  - but I wasn’t frightened because he didn’t seem frightened. ‘Are you awake, Eve? Sleep always makes things feel better.’

 

I spent a lot of my childhood in hospital, and I loved it. In hospital you could go to the playroom and play with other children if you weren’t covered in any rashes and your temperature wasn’t high. In hospital school you didn’t have to do sums; you played with musical instruments. Everybody wanted the triangle. I usually got a glockenspiel. There was a Scottish nurse who used to call me her ‘bonny wee lassie’ and let me sit on her knee. One night Sister Lights, the most important nurse, was trying to find a way to keep me entertained because I was a very talkative child. ‘Can you believe this child was in a coma a week ago?’, she remarked to another nurse before taking me on the most exciting little trip of my at that point short life, a trip to the neonatal ward where she showed me newborn twins. I was four years old, but in my 30s I went to a counsellor called Alice and she had twins who were 4 years younger than me, born in that same hospital. They were in hospital for a long time after a difficult entrance to the world. I firmly believe those were the little babies I saw that night. It would never happen now; I’d be understandably considered as a big old infection risk.

 

My love of being in hospital all changed when I got a paediatrician who regrettably thought of herself as a bit of a social worker. I have talked about her to various psychologists over the years. I’ve also bumped into her occasionally, and now that I am an adult I hope I can bump into her again because there’s something I want to tell her, and that is that I think she is a total bitch. This is why I came to this conclusion; my mother used to take me to all my hospital appointments because she didn’t work after I got sick but one day my Dad took me. Dr. Nastyface informed my father that my mother was refusing to accept that I had diabetes. This was, and still is, the stupidest thing I have ever heard in my entire life. My mother was fixated with the fact I had diabetes; she was anxious about it all the time. She was afraid when I started having hypos but any time she asked for help she was harshly criticised for allowing my blood sugars to be low (or high) in the first place. The woman never did anything but carp and criticise, even when everything was fine. She also made me feel that I was constantly being assessed, like she once sent me a letter after my GCSE results had come out and said ‘Another A for diabetes control’, as if it were an exam I had to pass.

 

The worst thing she did was this. A month or so before my eighth birthday my father was hit by a drunk driver whilst crossing the road on the way home from a family trip to the circus. He sustained a brain injury and was in a coma for six weeks. My sister and I moved in with our grandparents and Mum came home from the hospital at nights. We all slept in the one bed in my grandparents’ sprawling Victorian pile by the sea. The wind used to rattle the low windows at night; it was pathetic fallacy. Life was suddenly very scary. Blood glucose levels are affected by strong emotion. Mine rose and Dr Nastyface decided to admit me, for no real reason at all except because she wanted to exert power over us. This created a complete nightmare for my family as my father was in another hospital about 15 miles away and my mother couldn’t be in two places at once. When other patients’ parents asked what I was in hospital for, I could only say ‘I don’t know’. Maybe the doctor thought she was being helpful by taking the stress of caring for me away from my family, but that would just prove how totally clueless she was. My grandparents were dispatched to try and make me eat because I simply refused food while I was in hospital. This was as much because of its unappetising aroma as any emotional reason. After that particular admission I hated being in hospital.

 

Time went on. I became a teenager and diabetes care advanced incredibly. Human insulin was invented and it came in nifty devices which looked like pens. No more sterilising glass syringes and now you could test your actual blood sugar instead of doing home urine tests which were not very accurate. Having given myself my first injection at the fairly late age of 11, I could now carry my pens and blood testing machine about in my schoolbag and handbag as the aforementioned machines were no longer the size of a brick. My blood sugars were not generally a problem although they were usually high when tested in the paediatric clinic because I hated my doctor and the mere thought of her made me have an adrenaline rush. She usually talked to my mother and ignored me, and in return I ignored absolutely everything she told me. She had me on twice the dose of insulin I needed to be on which gave me frequent, horrible hypos and made me overweight and ergo treated the way other teenagers and adults treat overweight teenagers. Once I got to the adult clinic this was rectified and I’ve never passed out with a hypo or had a significant weight problem since. Plus, my care team in the adult clinic are all stars, each and every one of them. I shall refer to the chemical pathologist who looks after me as Dr. Excellent.

 

When I started falling asleep in class, as I said before, it was generally assumed that I was working too hard or it was something to do with my diabetes. Chronic fatigue is what I would call that tiredness now. It’s really quite horrible. If you work really hard and get ti4ed it’s like burning down a candle. With chronic fatigue it’s like some-one just comes along and suddenly turns off the light. My school friends thought my narcoleptic tendencies were an endearing idiosyncrasy.  Even fifteen years later when I tried to explain to an old school friend that it’s actually a symptom of a quite debilitating rheumatological disease her response was ‘It’s just you. It’s your little quirk’. I felt quirkily like slapping her.

 

After the fatigue came the pain, and I don’t have the works to describe the pain. It was overwhelming. It was also obvious to everybody. My school friends remarked on the way I had started to hold my neck. My grandmother complained that my neck was making me look like I had a double chin. My mother kept telling me to put my shoulders down, and I kept crying, ‘I can’t!’. Old ladies helped me across the street. Then my right ankle swelled up like a water balloon. That didn’t seem good to me...  it was clear something was wrong to everybody except my doctor. ‘You’re too young to have a rheumatological disease’ she said repeatedly over the eight years I tried to get help. I was referred to physio a couple of times. They said it was bad posture and put my neck in traction. When you’re neck is very inflamed, putting it in traction is not good. Mum commented that my neck felt burning hot to the touch.  I was scared knowing that there was something wrong and nobody was helping. I used to manipulate my diabetes to have health crises, thinking that if I was seen by a doctor urgently some-one would realise there was something wrong with me. I indulged in attention seeking behaviour and was a real pain to my friends and to my teachers. At last I convinced myself that if the doctors took x rays and said there was nothing wrong, there must actually be nothing wrong with me and I would grow out of these symptoms, as severe as they were.

 

I finished school and got the whole way through a first degree and a Master’s degree by the time I was referred to a rheumatologist and finally got a diagnosis. Unfortunately it was the wrong diagnosis, a quite slovenly diagnosis. But I’ll talk about that later. As an adult, I decided to take charge of my health and changed my GP. My new GP took a test called ESR (erythrocyte sedimentation rate), one of the quickest and cheapest tests on the NHS it measures the level of inflammation in the body. Although she felt my neck and my ankles (now they were both constantly swollen) couldn’t possibly be related and if it was rheumatoid arthritis it would have shown up on the x ray I’d had of my ankles, she acquiesced to do this blood test. The results were through the roof. I was finally referred to a rheumatologist. At that point in my life I had never heard the word ‘rheumatologist’.  People now ask why I didn’t see a consultant privately before then, but as I say I didn’t have the knowledge to get myself help. I didn’t even know what a doctor who dealt with joint diseases was called, or if I even had something anyone could treat.

 

Months wore on and the pain in my ankles started to affect the way I walked quite significantly. At last I had my first appointment with the rheumatologist, who with the benefit of hindsight I will refer to as Dr. Useless. He was the first person who used the word ‘arthritis’. I was shocked by this word. It means inflammation of the joint, which I knew I had but I never thought of it as arthritis. He asked why I hadn’t asked to be seen in rheumatology clinic sooner as ‘you clearly have significant difficulty with your joints’. He ordered some x rays and one of them showed that the top 3 (although now I am told it’s only 2) vertebrae of my neck had fused together. ‘There is a form of arthritis which can do that. We’ll have to take more test’. I had some more blood test and was told that I would be seen within a few weeks in the rheumatology day ward. I thought I had found some-one I could trust, who believed me and would help me. I was wrong.

 

 

The Big Day came, the day I was admitted to the rheumatology day ward. I was told that I had a form of arthritis called ankylosing spondylitis (actually, I have seronegative rheumatoid arthritis). I could hardly say it yet alone understand it.  ‘The damage to your neck is severe and mostly irreversible,’ Dr Useless proclaimed, ‘We can’t restore the movement but we can help with the pain and discomfort.’ This turned out to be pretty inaccurate... not the damage bit, the pain and discomfort bit. Then a nurse told me I would be given mediation ‘to stop your arthritis getting any worse’. I was told I would need monthly blood tests whilst on this drug, so naturally I asked what for. ‘Well, it can have some effects on your blood so we just check and make sure you’re ok every month. ‘I was shocked for being told I had an unpronounceable disease, in a fair bit of pain and in no mood to be patronised, so when the Dr Useless turned up again I asked, ‘What exactly are the side effects of this drug?’ His totally unacceptable reply was, ‘The worst it can do is kill you, but then aspirin can kill you.’ The medical students and registrar who followed Dr Useless like a shadow chortled sycophantically. I was appalled. In diabetes care efforts are made to make sure patients are well informed about their condition and medications. I had entered an alien territory in which I was going to have to fight for information, and positively struggle for the smallest degree of respect. I was also going to have to pay to be seen, but I didn’t know that at that moment in time.

 

There was an old lady in the bed beside mine. When the merry band of completely insouciant healthcare professionals moved on, she did what she could to lessen the horrible shock she knew I must have been feeling. I am grateful to her. So many people would not have engaged a stranger in conversation at what was obviously a defining moment in their life. I had a second auto immune disease, a second disease which would affect my whole body and every aspect of life. But this none was worse than the first one. This one hurt, and it hurt continuously, every day and every night. It is very hard to describe to people who have never experienced it what it is to be in pain all the time, with no break whatsoever, for decades. How it wears you down, and enters into your working life, your relationships, your thoughts, your plans, your outlook and even your personality, twisting and distorting physical joints and hopes and dreams. And I had just learned there was no cure; the disease which caused it would be mine for life. But Mrs Eaves (I can’t forget her name, even all these years later), was quite sure there would be some very nice things in the future, too.

 

Then came the next shock of the day. It had been decided that I should have steroid joint injections into my ankle. Let me describe it, although it is what it sounds like: they take a great big needle, and inject your ankles. Needles in your ankles. Once my cousin accidentally closed the boot of his car on my arm. Steroid joint injections are approximately ten time more painful than that. ‘I haven’t screamed like that since I jumped off the top diving board at Bangor swimming pool,’ laughed the junior doctor administering the torture. I appreciated her attempt to lift the mood, but it didn’t really help at all.

 

And to top it all off, I wasn’t allowed a sandwich for lunch like everybody else because of my diabetes. I eat sandwiches every day for lunch! Their knowledge of diabetes was in the dark ages. This had serious consequences years later, but on this particular day, on top of everything else, I had to endure horrible stew which was all carrots and no potato.

 In the years that followed my arthritis, despite the drug that was supposed to ‘stop your arthritis getting any worse’, spread from my neck and my ankles to me jaw, shoulders, elbows, right wrist, fingers, left hip, ribs and knees. Nobody expected this because they had given me a diagnosis of ankylosing spondylitis based on the fusion in my neck. I read the literature on it and could not recognise myself in any of the leaflets. Dr Useless basically dropped the bombshell of this diagnosis on me and didn’t see me again. I was supposed to be seen every 3 months, but I had to go to my GP and get him to fight for an appointment for me. I was basically told I had an obscure disease, handed a leaflet and then dumped. There was no support available whatsoever. On my next appointment, Dr Useless said ‘you’ll do well’ and refused to answer questions such as how did my DMARDs (Disease Modifying Anti Rheumatic Drugs) work. What were they really doing to my body? The answer was they work by suppressing the immune system, something I really needed to know in that diabetes can do the same thing. Actually, Dr Excellent in the diabetic clinic was and is the only person who explains anything about my arthritis to me or even understands that I have a need and a right to know what is happening in my body and also what the treatment is doing to it. After that, two years went by without my being seen by a rheumatologist. In the end I made a private appointment with another rheumatologist who the transferred me to his NHS list. Not that that helped any. My diagnosis was wrong but no rheumatologist will challenge the diagnosis of another, so I got no help. There was some mention of the new wonder that was o then horizon, biologic drugs. But my diagnosis was AS and these drugs were not yet licensed for AS, so I just did the rounds of DMARDs, none of which worked and in the case of one of them, methotrexate, caused vomiting and hair loss and abject misery. I was given stronger and stronger painkillers. The disease continued to deteriorate.

It was more than a year after my diagnosis that I got my first ‘proper’ job as Campaigns Officer for a major disability charity. During the first year of my working life I had 20 weeks of sick leave, although I had been told that people with AS rarely needed time off work. This was because my right knee had now swollen up and descending stairs was very difficult. The building where I worked had no lift, many stairs and no offices on the ground floor. I was given an office quite low down in the building and an occupational therapist came out and gave me a new chair and desk, a raised toilet seat and extra stair rails but even with this help life was pretty difficult. When I got back to work after blocks of sick leave, I would often have to work for 2 months before I was paid again because as a new employee my rights to sick pay were limited. After only two years in post I had to resign on health grounds. ‘Retired at your age!’, my Latin teacher from school scoffed. People think arthritis is ‘aches and pains’. They don’t think of it as the kind of disease that can leave you unable to work at the age of 26.

Again I was unemployed for over a year before being employed by my father in the charity he had started for people with acquired brain injuries and other disabilities. Although he was disabled by his accident, my father had regained the compus of his mentis and set about providing support after our experience of having no support whatsoever after his accident. He realised the importance of social contact and activity for people who were often very isolated and devoted his life to it. He took me on to extend the project into North Down. I found myself managing contract staff and volunteers, writing policies, liaising with statutory agencies and writing press releases. All great experience and I got to know the families I was working with well and formed an affection for many of them. My father and colleagues understood my disability and I was able to timetable hospital appointments etc without too much trouble. I worked there for 6 years and I loved it and when I left I sued them, which involved suing my own mother. More about that later.

 

One day during this time I went along to my routine rheumatology appointment. I hadn’t had one in about a year and a half, and I was hoping that they would do something. Anything at all. My treatment plan was not working. I was in my mid to late twenties at the time and the girl I saw was younger than me. She offered to put me on a course of oral steroids. ‘Isn’t hat dangerous for diabetics?’ I asked nervously (I was well informed by that stage).

 

‘Oh, do you have diabetes?’

 

‘Isn’t that in my notes?’ (Actually on the cover of my notes the letters IDDM were written in huge black letters: Insulin Dependent Diabetes Mellitus)

 

‘This writing is terrible! Can you read these notes?’ sliding them towards me.

 

‘Yes. It says IDDM on the cover.’

 

After this appointment I realised I had to do something as I was getting no help. My parents asked around for help, and my mother’s cousin’s husband who worked for a major drug company found out about a doctor in Bath at the Royal National Hospital for Rheumatic Diseases who was a world expert in ankylosing spondylitis. I got an appointment within the week and my mother and I flew to Bath. Dr International Expert was great. She was the only doctor who ever asked about how my disease developed, what the early days were like. After examining me she told me decisively that I did not have AS. She felt it was most likely to be juvenile idiopathic arthritis, basically rheumatoid arthritis which develops in childhood. She found a lot of swollen joints and offered to inject them (no, thanks!). Then she wrote to my rheumatologist. I was now on my 4th rheumatologist in Northern Ireland. Dr Useless hadn’t seen me, so I’d gone to a second rheumatologist via making a private appointment but he didn’t give a damn and was no help. Then I saw a wonderful rheumatologist but she decided to specialise in paediatric rheumatology, so I went private to number 4. Phew! Anyway, now I was eligible for biologic drugs. They were the only hope, but the waiting list was two years and at the time they were linked to certain forms of cancer and aplastic anaemia, which can be fatal. Three people had died through taking these drugs when they first became available in Northern Ireland. It was a big decision. I dithered about it for about two years out of pure fear.

 

I had to have a detailed assessment to see if I was eligible for biologic drugs. There was no doubt that I was. I waited for two years between the assessment and beginning the drug. My mobility was growing worse and worse and it wasn’t unusual for me to spend whole summers in bed, listening to the voices of the people outside in the sunshine on the coastal path outside my house. Thirty joints in my body were affected, and they were all pretty painful. Eating, walking, getting dressed and other daily tasks were very difficult. The worst of all was getting up in the morning. I would wake and lie in agony, afraid to move at all until I really had to get up. Then I would have to grab hold of the bed head and the sink (our house was once a guesthouse so all the bedrooms have sinks) and haul myself up. Often my legs would not hold me up and I would fall back to the bed several times before being able to stand. Then instead of walking I had to walk from one leg to another to be able to leave the room. Once up I would take my injections, blood sugar test and medications. Arthritis medications interfere with diabetes so I test my blood sugars very frequently. When I am on oral steroids my blood sugars are very high, and when they steroids start to pass out of my system I have low blood sugars because my insulin has been increased.

 

During this waiting period my father died. He was 59 and had been in hospital for 10 days where he had a battery of tests. He was declared fit and healthy, sent home and died. Just like that. I actually had a period where the shock blocked out the physical pain, but that summer I was really very ill. Rheumatologist No. 4 admitted me and gave me intravenous methylprednisolone, steroids in a drip. Unfortunately in the rheumatology ward their knowledge of diabetes was not up to date. In fact, it was positively archaic. I called Dr Excellent’s registrar, which cost me £5 on the hospital pay phone because mobiles had to be switched off on the ward. I relayed to her the advice I had been given on how to manage my diabetes whilst on the steroids. She replied ‘Whatever you do, don’t do that.’  I was positively terrified. Dr Excellent, proving his excellence, came out to visit me as a visitor. I was very impressed but also even more nervous. Sadly, it turned out I was right to be anxious. When I had my next routine ophthalmology appointment it turned out that the swings in blood sugar caused by the steroids had triggered proliferative diabetic retinopathy, when the eye can’t get enough oxygen due to being overloaded or underloaded with sugar, and so it grows new blood vessels to try and rectify this. These new vessels are brittle and can break, leaking blood into the eye and causing permanent sight loss. It was possible that I could wake up one morning totally blind.

 

My eyes are a bit of a miracle, as it happens. Most people with my condition have laser treatment to destroy the new vessels. Unfortunately this also destroys parts of the retina. My body kills off the vessels itself. My ophthalmologist, Dr Fabulous, says that in her career she has seen thousands of patients who develop new vessels which proliferate and burst and only about 6 patients like me. My retinas are photographed and used to lecture medical students. Recently I’ve had a lot of steroid treatment and been quite worried about my eyes but they are still doing well after more than five years.

In 2008 I finally started taking biologic drugs. The first drug I took in this family was called Humira and it was miraculous. I went from not being able to get off a chair to flying to Beijing via Dubai and climbing the Great Wall of China at Mu Tian Yu, which is one of the harder places to climb the Wall in Beijing. Some things that had been impossible now seemed possible, for example I had decided not to become involved in serious romantic relationships because I had seen my mother care for my father. She had not been unhappy doing this, but in my head I would be a millstone around somebody’s neck, especially at such a young age. Besides, having arthritis in nearly every joint in your body makes a sexual relationship a terrifying prospect painwise. I had initially wanted to train as an opera singer when I left school but the fusion in my neck made this impossible. Now I started teaching singing and loved it, as well as writing and recording my own songs and releasing CDs which I sold to benefit my father’s charity for which I still worked. I was on top of the world for 9 months and then the drug failed. It just simply stopped working and I was in agony again and very depressed. They put me on a second TNF blocker but it didn’t work at all so I went back on the Humira.

 

Part of the reason the drug failed was due to my traumatic experiences in work. When my father died a real gentleman took over his job. I had my first orthopaedic surgery due to arthritis at this time, a synovectomy in my left elbow. My elbow was and is stuck in the shape of a boomerang and will not rotate. The surgery was to try and free this movement but it didn’t work. My manager was brilliant in allowing me time off and helping me when I got back to work.  Very sadly he died suddenly and was replaced by a clueless cow. She asked if I was claiming Disability Living Allowance and in my shock I said no. She then told me I was not really disabled and reversed all my reasonable adjustments. She phoned me at home at 10pm asking me to do menial tasks on the spot. She took my car and bought chips in it. She asked me to do things I physically couldn’t do and tried to discipline me when I couldn’t do them. So I quit and took them to industrial tribunal. My mother was on them management committee so I was in essence suing my own mother. She didn‘t mind. They settled out of court on my terms. My next employers were no better, complaining about me taking time off for hospital appointments and treatment.

 

I am now self employed teaching singing. I don’t make a lot of money but at least I can go and have my RoActemra every month. My rheumatologist, no. 5, tells me that my disease is very severe and if this drug doesn’t work there is nowhere else to go. Thankfully it is working, although after they took me off Humira to have a ‘wash out’ before starting RoActemra my arthritis went nuts and now I have no cartilage in my ri9ght knee. The bone is sitting on bone, so I need to have my knee replaced at the age of 35. This is not ideal as I will need a second replacement in 10-15 years’ time and the second replacement is usually not as successful as the first. Technology is advancing all the time, though, so I’m not worried about that. I have started using a wheelchair recently. People often talk to my mother about me as if I wasn’t there or speak slowly and loudly as if I were deaf or had a cognitive disability. Legs a bit gammy, but brain still in operation, thankyou very much.

 

What about the future? Once I have my surgery and if the RoActemra keeps working I shall be mobile again. Next year I am going to study for a MMus in Songwriting at Bath Spa University where I can advance a new career in music publishing whilst being seen at the Royal National Hospital for Rheumatic Diseases, a centre of excellence for the treatment of diseases like mine. Research is ongoing into rheumatoid arthritis and similar diseases and new biologics are coming on the market, although the National Institute for Clinical Excellence does not always see fit to permit them to be used on the NHS. Hopefully this will change and there will be a greater realisation of what arthritis does to people and that TNF inhibitors do not work for every-one. There needs to be a wider variety of drugs. I am glad to have been born at this time when these new treatments are available. The future is much brighter than it seemed when I was eating malodorous stew with too much carrot and not enough potato.

 

Addendum:

28th March 2013

I went to Bath. After a week as an inpatient at the Royal National Hospital for Rheumatic Diseases I started a biologic called abatacept and have been a wheelchair user again since.I had a right knee arthroscopy in May 2012, a scraping out of the joint. The pain is much, much less and I am able to play piano again. In fact I passed my MMus and released an album. The dreams I thought I had lost came back to me.

14 comments

  • Linda Sargent
    Linda Sargent
    Brilliant blog, Eve. Huge empathy from here (am now 62 er, yikes!) but have had RA since I was twelve with all its associate adventures en route. Having a break from Humira and Leflunomide at mo while recovering from infections. Best of best luck with all your plans.

    Brilliant blog, Eve. Huge empathy from here (am now 62 er, yikes!) but have had RA since I was twelve with all its associate adventures en route. Having a break from Humira and Leflunomide at mo while recovering from infections. Best of best luck with all your plans.

  • john richmond
    john richmond
    hiya what a great read, so pleased you are getting on with it well done.

    hiya what a great read, so pleased you are getting on with it well done.

  • Eve
    Eve
    Thanks, guys. Linda, I'd love to hear your adventures! The whole infections thing iis not fun.

    Thanks, guys. Linda, I'd love to hear your adventures!
    The whole infections thing iis not fun.

  • Eve Williams
    Eve Williams
    Thanks, guys. Linda, I'd love to hear your adventures! The whole infection thing is not fun. It really is th4e downside of biologics.

    Thanks, guys. Linda, I'd love to hear your adventures! The whole infection thing is not fun. It really is th4e downside of biologics.

  • Linda Sargent
    Linda Sargent
    Fifty years of adventures, mmm, must be a book in there? Have written a couple of short pieces on RA which I'd be happy to send to you if you email me at above address. And, yes, the infection stuff is really being a pain at mo and I feel a little like a naughty child having a break from drugs. ;)

    Fifty years of adventures, mmm, must be a book in there? Have written a couple of short pieces on RA which I'd be happy to send to you if you email me at above address. And, yes, the infection stuff is really being a pain at mo and I feel a little like a naughty child having a break from drugs. wink

  • Joanne Catterson
    Joanne Catterson
    Hi Eve enjoyed reading your blog. I have psoriatic arthritis and I just got my funding for biolgic treatment. They gave me my first injection of Humira about 5 weeks ago but unfortunately I took an allergic reaction and haven't been well since! Now just a waiting game to see what Musgrave hospital are going to do next!

    Hi Eve enjoyed reading your blog. I have psoriatic arthritis and I just got my funding for biolgic treatment. They gave me my first injection of Humira about 5 weeks ago but unfortunately I took an allergic reaction and haven't been well since! Now just a waiting game to see what Musgrave hospital are going to do next!

  • Deanna LeCoyte
    Deanna LeCoyte
    Hi Eve - have just read your very informative blog. It was hard for me to read thinking of all you have been going through in your short life. I wanted to wave a magic wand and have you mended. This not being possible I send my healing and comforting hugs and prayers. When you are living near me, I will be there for you whenever you need me. God bless. dx

    Hi Eve - have just read your very informative blog. It was hard for me to read thinking of all you have been going through in your short life. I wanted to wave a magic wand and have you mended. This not being possible I send my healing and comforting hugs and prayers. When you are living near me, I will be there for you whenever you need me. God bless. dx

  • Eve Williams
    Eve Williams
    Thanks, Deanna. That's lovely. Joanne, do you recognise Musgrave Park in my blog? Lol. The person beside me in hospital last week had psoriatic arthritis and had a bad reaction to Humira but is having a great time on RoActemra. Hopefully they'll find the right drug for you. Let us know how it goes!

    Thanks, Deanna. That's lovely. Joanne, do you recognise Musgrave Park in my blog? Lol. The person beside me in hospital last week had psoriatic arthritis and had a bad reaction to Humira but is having a great time on RoActemra. Hopefully they'll find the right drug for you. Let us know how it goes!

  • John Sage
    John Sage
    What a great blog. I was diagnosed with RA 17 years ago but have suffered for 40 years. I'm on a combination of Methotrexare, Leflunomide and Hydroxychloroquine. Loads of side effects but I can get around and have started my own business. I've been lucky with my Doctors. I feel for you. Sometimes the NHS can be a bit of a lottery. Pray that you get the relief I enjoy.

    What a great blog. I was diagnosed with RA 17 years ago but have suffered for 40 years. I'm on a combination of Methotrexare, Leflunomide and Hydroxychloroquine. Loads of side effects but I can get around and have started my own business. I've been lucky with my Doctors. I feel for you. Sometimes the NHS can be a bit of a lottery. Pray that you get the relief I enjoy.

  • Eve Williams
    Eve Williams
    John, you went 23 years without a diagnosis?!! That's ghastly! Glad you're feeling good now, though.

    John, you went 23 years without a diagnosis?!! That's ghastly! Glad you're feeling good now, though.

  • Heather Cassidy
    Heather Cassidy
    Hi Eve, thank you for sharing your very personal and painful journey. I know your strength will help others. I am so proud of you x

    Hi Eve, thank you for sharing your very personal and painful journey. I know your strength will help others. I am so proud of you x

  • J.J.
    J.J.
    I have never seen someone more accurately capture the sense of frustration that those with chronic illness develop with those who are well. The days you feel "good enough" to get anything done people like to say absurd things and minimize the struggle you face on a day to day basis. PTSD is very similar, in that you can't really "see" the effects, so that the days you have it all just barely under control the condescending "whats wrong" attitudes of those around you is even worse than the initial problem. I have said it before Eve: You have the patience of Job.

    I have never seen someone more accurately capture the sense of frustration that those with chronic illness develop with those who are well. The days you feel "good enough" to get anything done people like to say absurd things and minimize the struggle you face on a day to day basis. PTSD is very similar, in that you can't really "see" the effects, so that the days you have it all just barely under control the condescending "whats wrong" attitudes of those around you is even worse than the initial problem. I have said it before Eve: You have the patience of Job.

  • John Sage
    John Sage
    Hi Eve. I may have confused you and anyone reading my post. I have suffered the effects of RA for 40 years. Prior to that I was told it was growing pains. When I turned 14 it was decided that surgery would help. They opened up both my knees on more that one occasion. Last time was when I was 18. Nothing found so I was sent away and told to stop waisting doctors time! I wondered for years how opening up my knees would benefit my hands and hip joints. I'm now approaching 60, feel 40 and have a great medical team at the GWH in Swindon. If everyone that has RA or any associated auto immune complaint can have access to the same guys as me I'm certain there would be a lot of very happy people around. Eve, your blog is an encouragement to all. Thank you.

    Hi Eve. I may have confused you and anyone reading my post. I have suffered the effects of RA for 40 years. Prior to that I was told it was growing pains. When I turned 14 it was decided that surgery would help. They opened up both my knees on more that one occasion. Last time was when I was 18. Nothing found so I was sent away and told to stop waisting doctors time! I wondered for years how opening up my knees would benefit my hands and hip joints. I'm now approaching 60, feel 40 and have a great medical team at the GWH in Swindon. If everyone that has RA or any associated auto immune complaint can have access to the same guys as me I'm certain there would be a lot of very happy people around. Eve, your blog is an encouragement to all. Thank you.

  • Eve Williams
    Eve Williams
    Growing pains, John? Oh dear! Glad they finally got you sorted.

    Growing pains, John? Oh dear! Glad they finally got you sorted.

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