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I'm not looking for a miracle anymore

I was twelve years old when I first noticed that my right knee was swollen and painful. My GP referred me to an orthopaedic specialist, who aspirated my knee and sent the fluid off for analysis; a procedure that I was to endure regularly for many months! My leg was put in a full plaster cast and soon after I was admitted to hospital for a tissue biopsy. I spent the next nine months having my knee aspirated weekly, and finally my parents were told that I had septic arthritis.

Shortly afterwards my GP recommended that I should go to London for a second opinion. I was duly taken to visit another specialist, who threw away my plaster cast, strapped my leg up and gave me intensive physiotherapy to help build up my wasted thigh muscles. I learnt, that the reason for this speedy second opinion was because the orthopaedic specialist had informed my GP that he was planning to amputate my right leg above the knee! He had apparently identified bacteria in my leg which would lead to gangrene. My GP (to whom I will be eternally grateful) thought this was appalling, hence the referral. The opinion now is that the bacteria that had been isolated was either hospital contamination or skin surface bacteria!

Within weeks my knee had settled down and I was to get no further trouble for about ten years, when all of a sudden it became swollen again. This time I saw a different orthopaedic specialist who diagnosed joint inflammation and performed an operation to remove the membrane surrounding my knee joint. I made a poor recovery from surgery. I think the specialist thought my problems were 'all in the mind', but when it became apparent that I could not move my leg (as opposed to would not) I was put into plaster and sent home on crutches. Within days my arms began to ache, this was put down to my use of crutches.

Over the next three months I felt increasingly unwell, I became lethargic and suffered generalised pain in my joints. I was finally admitted to hospital for tests. During my stay I noticed that my fingernails had become pitted and had started to lift off of the nail beds. I worked in a medical laboratory at the time and thought that I had contracted a fungal infection. I was seen by a dermatologist who looked at my nails and asked what was to become the 64 million dollar question "Does anyone in your family have psoriasis?" I replied that my sister was covered in it. The dermatologist then told me that he was sure I had psoriatic arthritis (PsA).

At last after twelve years I had a diagnosis, but where did I go from there? I was very ill and still in hospital. I began a course of gold injections which were soon stopped when I had a severe reaction to them. I was allowed home on Christmas Eve armed with medication and hopeful that now I had a label and some treatment I would get better and stay that way, this turned out to be wishful thinking!

Over the next few years I knew I had to be careful with my knees but apart from that I was generally well and worked full time, I also took a maternity break and while I was pregnant there was, if anything, an improvement in my health and no sign at all of any arthritic problems.

I had a minor car accident during which I hit my knees and jarred my elbow. That night I awoke with excruciating pain in my right elbow. Over the next six months my GP prescribed various anti-inflammatory treatments, none of which seem to give much relief. I began to feel generally unwell again and was referred to a specialist. I was lucky! Two weeks later I saw a rheumatologist who knew a lot about PsA. He recommended steroid injections into my elbows, which by then were seizing up and causing me extreme pain. Sadly the injections had no effect. Shortly afterwards I was so ill that I was admitted to hospital for further treatment. I endured steroid injections into most of my joints and the rheumatologist prescribed a drug therapy regime which included a 'cocktail' of non-steroidal anti-inflammatory drugs (NSAIDs), steroids and sulfasalazine. Eventually I returned home, still sick but at last feeling that I was in the hands of someone who knew the condition and would do all he could to keep it under control.

So what is happening now? I left my job as it was a physical job which entailed a lot of standing and walking and climbing over machinery as well as mental exertion, which I just could not endure. I realised in the weeks and months after my big 'flare-up' that my life would have to change. I obtained a sedentary job in a totally different field.

I have obtained various minor aids in my home which have helped me to remain as independent as possible. My rheumatologists does his best to avoid admitting me to hospital for treatment, as he knows that I am a single parent with a five year old son. I continue with various drug 'cocktails' and my arthritic problems vary throughout the year, I always feel better when the warm weather is here. I have permanent bone damage in my elbows, right wrist and knees and my mobility is quite badly impaired now. I find my specially adapted car and voice activated computer a god send. I have had problems 'coming to terms' with my illness, although I have finally recognised that this disease is a disability and it is not going to go away. I realise that it is up to me to adapt my life to cope with my limitations; much as I object to this!

I get extremely tired, irritable and endure great pain. I try very hard to cope with daily living by myself but it is hard at times. It is especially hard to ask for help, both for people to do the practical things I can no longer do and also to ask for medical help when it all gets too much. I get so exhausted that some days it is an effort even to talk. I live in hope that my rheumatologist can at least make the rest of my life 'bearable' -I'm not looking for a miracle anymore. I am sure that an early diagnosis of PsA is vital to prevent or delay permanent bone damage and maintain mobility for as long as possible. In my case I nearly lost a leg through the wrong diagnosis being made!

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