Hi everybody.
I thought I'd introduce myself. I am 48 years old and have had RA since 1973. So, I'm afraid this is rather a long post so forgive me but I hope it will help some of you dealing with RA.
Originally diagnosed with Still's, my parents were told there was every likelihood I would end up in a wheelchair by my late teens but, 39 years on, I carry many battle scars and war wounds but I'm still vertical - just!
My story started one day when my mum came to pick me up from school for a routine hospital appointment (I was born with a slight heart murmur) when she noticed that as I crossed the playground, I was limping and my right knee seemed to be swollen. She mentioned it to the paediatrician and there began my "journey" (don't you hate that word?).
1973 was the dark ages for RA treatment compared to today and all they could offer me were painkillers and Brufen, an early form of Ibuprofen. My knees were the main problem in the early days and my parents tried everything, bless them. My Dad was luckily a member of BUPA through his work and they paid for me to see a private rheumatologist in Harley Street. I still remember the day she stuck the biggest needle in the world into my knees to aspirate them!!
Life ticked along through my teens, I was a stubborn little madam and refused to be kept down. Treatment then was painkillers and rest but I loved horseriding and all the things teenage girls love to do so I didn't want to do much of that. It's hard to think now that I managed to keep going the way I did although I do remember having to take quite alot of time off school but I suppose your memory shuts out the worst bits.
When I was 17, it looked like I'd gone into remission as everything seemed to settle down. By the age of 18, my paediatrician (that's who I saw - no rheumy) discharged me and we thought the worst was behind us. Oh how wrong we were.
A year later, after a day horseriding, I noticed a pain in my left hip. Over the next few months, it got worse and worse until eventually I went to see my GP who immediately referred me to a rheumatologist. They said my hip was shot but as I was so young (just 19) they wouldn't refer me for a replacement. I struggled on for a few months until I could hardly walk. My mum bless her used to take me to work and help me in, I would sit at my desk all day and then she would come back and help me back to the car and bring me home. I was young and naive in those days and didn't want to rock the boat with my rheumy but eventually my firm gave me permission to claim on the company BUPA and I saw a rheumy in Harley Street again. He was my saving grace and became a great friend. He's in his 80s now but we still keep in touch. He referred me immediately to St Thomas' Hospital and on October 11 1984, I underwent a total right hip replacement. It was almost unheard of in the early 80s for someone so young to undergo such surgery and the hospital stay was 4 weeks! After a fortnight, I was allowed to go home for a day here and there but always had to come back to the hospital at night.
The one thing I remember was the conversation I had with my surgeon the day before. He asked me if I was sure I wanted to go ahead as it was major surgery and there was no guarantee it would help - hip replacements were still in their infancy - and even if it worked it was likely it would only last 5 years. My answer was "I have no life. If you can give me 5 years, then it's worth the risk. If it doesn't work I'm no worse off than before."
The effect on my life was amazing. For the first time in what seemed like forever, I was able to walk pain-free. My boyfriend and I celebrated by taking a trip to Paris for my 21st birthday and we walked everywhere. It was bliss!
We married 4 years later and our son was born 2 years after that. We thought long and hard about it but we both wanted children and my doctors all said that so long as I was monitored throughout and delivered by C-section, they couldn't see it being an issue. By now, I was on prednisolone as well as sulphasalazine. They stopped the Sulphasalazine but I was allowed to continue with the steroids. I fell pregnant relatively easily and felt amazing! Everything settled down - no pain, no flare-ups, loads of energy. I had my son just before Christmas 1990 and he was a joy. But, after 24 hours I hit the deck big-time. My joints swelled up like balloons and I was in agony. I was in hospital for 10 days, coming home on Christmas Eve.
Those first few weeks were difficult but I found ways round most things. I had a changing table as I couldn't get down on the floor and when I was out I became a dab hand at changing him on my lap! But, the niggling in my right hip that I'd had in the last few weeks of my pregnancy began to get worse. I think I knew what it was but didn't want to face up to the fact that my other hip had "gone". But it had and when my son was just 5 months old, I went into hospital to have my other hip replaced.
It was staggering how much things had changed in just 6 years but I was up and about the next day and it was all sorted by my son's christening a few weeks later.
We put it down to bad luck and so decided to add to our family and I became pregnant again in the summer of 1992. Things again were brilliant and I sailed through my pregnancy once more. But, the same problems began to arise in the last few weeks and once again, after he was born, my left hip began to play up. It had lasted 9 years so I suppose I was already living on borrowed time. In January 1994 I had my 1st revision and it was a disaster! I had the surgery by epidural which I had also had with my other hip 3 years before and had been great (if you forget about the vivid dreams I had during the surgery of "having the builders in"!!). This time though I knew something was seriously wrong.
As my legs began to come back to life, I realised that I still couldn't feel my left leg. I was examined and the doctor said it was just the epidural taking its time to wear off as the surgery had lasted over 8 hours. They got me up and walking with crutches but I still had no feeling whatsoever in my left leg. It turned out that because the surgery had been so complicated, there had been damage to the femural nerve which runs down the leg into the foot. Basically, my left leg was paralysed. So there I was with a 3 year old and a 9 month old baby and I couldn't walk. I was a month off my 30th birthday. The depression I had experienced on and off since the early days of my diagnosis came back with a vengeance and I went into complete meltdown.
Anyone who has experienced nerve damage will know that the nerves don't remain completely dead. They do start to come back and the first thing in my case was pain. Oh boy the pain. I thought I had a high pain threshold after all the years dealing with RA but nothing prepared me for it. I would scream in agony and ended up in hospital on more than one occasion. I had no feeling, could not feel heat or cold but I could feel pain. I was referred to a rehab facility (thank God once again for BUPA) where I stayed for 3 months. Through sheer determination and alot of hard work in the hydro pool and the gym, I eventually started to gain some strength in my leg but was still unable to walk unaided and it was still numb (still is!)
The hardest thing was the day my occupational therapist sat in my room and said she thought it was time I registered as disabled. It broke my heart. She gently explained that by doing so, it would open up so much more help for us and I knew it was the right thing to do but somehow it felt like I had failed. I'd fought for so long and it felt like this "thing" that had so cruelly invaded my body 20 years earlier had finally beaten me. The occupational therapist registered me with my local authority and she told me how to go about claiming for DLA - and they turned me down!!!
My consultant went mad and immediately called a case conference with my GP, my social worker and health visitor. Their intervention meant that I was awarded higher rate mobility and medium rate care in the short-term. On review a year later, the care component was revoked but I kept the higher rate mobility component. I didn't mnd. It was bad enough having to claim at all but I was determined that I would be able to get in and out of the bath and dress myself again - and I did. The mobility though helped us buy an automatic car so at least I had my independence back.
18 months after surgery, I gave my sticks back. I still have next to no feeling in my left foot (unless I tread on a crumb in bare feet and then it feels like a tree trunk has gone through my foot!) but I can walk now although I get very tired very quickly.
I had the most amazingly supportive husband and family and our family life ticked on happily. Good days and bad days but the good outweighed the bad. By this time I was on methotrexate and that really helped. There was one thing missing though. We both really wanted another baby. Looking back now, it wasn't the best idea in the world but I went to see my GP. He gave me the go ahead so long as I came of MTX which I did. I fell pregnant almost immediately.
This time things were fine. I even took part in a study at Birmingham University into pregnancy and RA. My hips held up. It looked like things would be ok this time. It was, so far as the RA was concerned but my baby had other ideas. I went into labout at 34 weeks and despite the best efforts of the obs team, they couldn't halt my labour. My baby was born by emergency C-section at 9.46pm on 31st July 1996. He had contracted an infection in the womb which had triggered my labour. He was whisked off to SCBU but, at a relatively healthy 34 week weight of 5lb 4oz, there was every likelihood that he would be fine - and he was. After 3 weeks in SCBU, we brought him home. And I knew then that enough was enough - no more babies for me! My hips stayed stable and my rheumy put it down to the fact that he was born early and didn't engage, thus didn't put undue pressure on my fragile hips. Our family was complete.
Sadly, 2 years later after 18 years together, my marriage collapsed. I can't say it was just the strain of coping with RA but that was a major factor. In some ways, I think he felt like he'd stopped being my husband and become my carer. Although things were difficult at first, we are now the best of friends and I'll love him always.
I moved to the South Coast the following year. Everyone thought I was mad moving away with 3 small boys and a medical condition but I needed to start again somewhere new and I wasn't entirely alone as I moved nearer my brother and sister-in-law. A few months later, I met my 2nd husband. The hardest thing was telling him about my RA. I arranged to meet him for lunch and took him to a local pub. I told him I had something important to tell him and told him the whole story. He was brilliant. He said he loved me and it didn't matter. we'd cope. We were married 3 years later.
He knew exactly what life had in store the day we married as, 2 years earlier, my right hip had failed again. It was replaced once more but, inevitably, complications arose and it dislocated. I woke in the night to find my foot was pointing in completely the wrong direction! It took an ambulance crew and two fire crews to get me down the stairs and to hospital.
I have it on good authority that the fire crew were rather gorgeous although copious amounts of Entenox at the time mean I can't confirm or deny this! I woke the next day in a plaster hip spica (a plaster cast that goes from your ankle to your waist) and I stayed in it for 15 weeks!
Physio and rehab followed once more but it was never right and always felt unstable. I was constantly worried that it was about to dislocate again. Eventually, my surgeon decided to replace it once more. So, once again I found myself on the orthopaedic ward undergoing my 5th hip replacement surgery. Thankfully, it was a success and (touch wood) things are still ok to this day.
In 2006, after jumping through many, many hoops, I was finally given the go-ahead to try anti-TNF therapy. It wasn't an easy decision but, like the conversation I had with my surgeon all those years ago before my first hip surgery, I really had nothing to lose. By this time, my overall health had deteriorated and I was spending more and more time in bed.
I began Enbrel in August 2006 and the improvement was almost overnight. I had more energy and I've not had a flare-up in 6 years. Although difficult at first, injecting myself became almost 2nd nature and now I do it without thinking about it. However, Enbrel failed at the beginning of this year and, after trying Humira for 4 months, my Biologics nurse has recommended I change to Cimzia which I begin in 4 weeks.
I'm by no means well. the disease itself is stable but the damage caused to my joints by so many years of attack, is considerable and I'm in constant pain. I can no longer work and struggle if I don't have my afternon sleep (how old am I??) But, I know that had anti-TNF been available in the early days of my diagnosis I would now be leading a near normal life.
My kids are grown and are brilliant. And my husband - well what can I say.
Life's by no means easy but we get by. As I said at the beginning, I'm still vertical which is a feat in itself. I now have a motability car and I hope I'll be able to keep it even through all the changes going on to the benefits system at the moment.
I hope my story will give some of you inspiration. For those of you newly diagnosed, listen to your doctors. The drugs available today are amazing compared to those when I was diagnosed. If I'd had access to them in the early days, my joints wouldn't be in the state they're in. I know it's scary when faced with the prospect of beginning an agressive drug therapy but, in my experence, the benefits have always outweighed the drawbacks. Yes, there are side effects but they only MIGHT happen, joint damage WILL happen if it's not treated. And I'd rather have a few good years of life than a lifetime of agony and illness.
Although I was fortunate enough to have private health care in the early days, that became prohibitively expensive in 2000 and since then I have had only NHS care. I have a rheumy I see once a year and the most amazing Biologics Specialist nurse who is always at the end of a phone and I also have a direct line to my physio who I can go to without referral should I injure myself or need some treatment (all standard practice at our local district hospital for RA/AS sufferers).
I've finally learned to pace myself. On bad days, nothing gets done but on good days I make the most of the lovely countryside and coastline I live near. I miss my job and I miss horseriding but things could be so much worse.
I live for today I'll deal with tomorrow when it comes...
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