Heard of Behcets disease?

Not many people have. And so I thought, seeing as today is Behcets Disease Awareness Day, I would share my story in the hope that it might help others, especially anyone who's struggling health wise and looking for a diagnosis...

I was ten or eleven when I first started with growing pains. Or that was what they told my Nan it was. But when the pain in my knees and legs became so bad that Nan had to push me around in a wheelchair she fought to get me to see an Orthopaedic consultant. He accused Nan, who’d adopted me when I was three, of being neurotic and over protective. When she denied this, he suggested it might be my neurosis – perhaps I was just trying to get attention. Either way, he thought we were both wasting his time.

Undeterred, Nan didn’t give up and argued with every doctor who would listen, refusing to believe that a young child could suddenly go from being active, enjoying gym, dance and life to being reduced to shuffling up and down stairs on their bottom, screaming in pain when getting in and out of the bath and unable to dress themselves.

Her tenacity paid off. Another consultant, with a much improved bedside manner and convinced the problem was with my back, tried me on traction for four weeks. It didn’t help but he referred me to a Neurologist. After many tests, between them, they discovered a defect with a disc in my spine. They operated and it improved. At the time there was nothing to suggest there may be an underlying condition. It was thought the operation had been a success. I was discharged and didn’t have any further leg or back problems for many years. Oh, there were many other symptoms over the years but nothing to link them and it's only now as I write this I see the connection and realise those early problems were the beginning.

Many teenagers develop Glandular Fever. It’s debilitating and can take months to recover so when I got it and around the same time started with clusters of severe mouth ulcers, we thought it was connected. A few months later, a new problem developed. On first appearances it looked like flea bites on my shins but they felt hot to the touch and hurt like bruises. Some grew so big it felt as if a horse had kicked me. A couple of years on, I woke one morning with the most terrible pain in my right elbow. Because I’d dislocated it when I was eight we presumed it was rheumatism but the pain was excruciating, almost as if it was dislocated and didn’t sit correctly in the socket so when I could bear it no longer, I went to the doctors.

He did some blood tests but they came back normal. However, he started to link the joint pain and the erythema nodosum (the lumps on my legs) together and sent me for a chest X-Ray to eliminate Sarcoidosis. It was clear. The lumps and mouth ulcers continued, along with the joint pain which had moved from my elbow and started flitting to various parts of my body. After continuous tests the GP drew a blank and said he couldn’t find anything wrong with me.

By the age of nineteen I should have been having the time of my life. I lived for Friday nights, to go to Cinderella Rockerfellas and Madisons in Leeds with my friends but by then the joint pain was becoming more frequent and when it flared, I found the pain so unbearable, I would cry myself to sleep at night. Yet to look at me, nothing seemed wrong. No redness. No swelling or hot joints. Normal blood tests. By the time I was in my early twenties the GP's had done everything in the way of tests and I’d tried many of the standard anti-inflammatory drugs (NSAID’s) and painkillers. Nothing helped. Even I started to wonder if it was all in my head.

Somewhere in the middle of all this I met and married my ex-husband and developed a promising career with Lloyds Bank. Life was good for a couple of years. And something even better happened when I got pregnant; all my symptoms – the ulcers, joint pain, lumps on legs - everything disappeared.

The euphoria was short lived. Within three months of having my first son, the symptoms came back with a vengeance. At last, with a different GP, I saw a Rheumatologist. He found my symptoms baffling too. He had heard of many cases of symptoms going into remission when women got pregnant and started to wonder whether my problems were hormonally linked. Or whether it was some form of arthritis. Or maybe Lupus or some other auto-immune disease.

As my symptoms worsened and he resorted to drawing fluid off my knees and injecting my joints with steroids and cortisone, the only thing that kept me going, as well as my family, was the reassurance of that Rheumatologist, and knowing I wasn’t going mad. At last, I’d found someone who believed me.

The effects of the injections were remarkable. My Consultant and GP prescribed a mixture of NSAID’s and prednisolone (Steroids) and for the first time in years I could dance. We went on a couple of wonderful holidays. I progressed in my job and had three promotions in two years. Whatever had been wrong with me, I was cured!

That was, until my son became seriously ill. Whether it was the stress or co-incidence, I don’t know, but my condition deteriorated rapidly. For a couple of years thereafter, my symptoms were out of control. Higher and higher doses of prednisolone were needed to get on top of my symptoms. But as I developed painful nodules around my joints and my eye sockets, even 60mgs of steroids didn’t help. With every new flare up, it seemed the pain worsened until it became all-consuming. I had to change my car to an automatic as I could barely drive. My ex-husband had to lift me in and out of bed, fetch painkillers in the night and help bath me and wash my hair. He made me a makeshift frame for the bed as I couldn’t even bear the weight of the bedclothes on my legs and feet. Looking back, I remember one day - it was ridiculous – I had injections in both feet then went to work afterwards for some meeting or other. I remember him saying he couldn’t keep ‘patching me up’ like this. But I couldn’t give in. Desperation and sheer determination were all that kept me going.

In the midst of this misery, by chance one day my usual GP was on holiday and I saw a new one who had an interest in Rheumatology. She had worked with a leading authority in Rheumatology at the leading Royal Orthopaedic Hospital, Oswestry and suggested he might help. I paid for a private consultation and met him two days later.

I’m a big believer in things happening for a reason. For the first time in my life I knew as soon as I met him that I had found someone who I could truly talk to and who understood my problems. He didn’t profess to have the answers. Whatever I had was complicated. My symptoms weren't typical of any of the obvious rheumatic ailments. He weighed up my symptoms and how I presented; the mouth ulcers, the erythema nodosum on my legs which was now attacking my joints and the severe joint pain but he was puzzled because other than an occasional bout of stomach ache, there didn’t appear to be any significant bowel problems and also, whilst I had mouth ulcers, I hadn’t had any vaginal ulcers. If I'd had these, he thought he could definitely say it was Behcets disease.

I was thirty-two years old and it was the first time, after twenty years of problems, anyone had mentioned the words, ‘Behcets Disease.’

***

It’s almost fifteen years ago that I found my lovely Consultant Rheumatologist. Since then, he’s seen the best and very worst of me. The toughest times were the year I spent ten weeks in the RJAH with Avascular Necrosis of my left hip and subsequent surgery. As a result, I had to retire from my job in the bank, aged only thirty-two. Then following a miscarriage and subsequent surgery, I stayed in for a week with acute diarrhoea stomach pain and profuse bleeding. At first they thought they had perforated my bowel in the procedure but I’ve had flare ups of ulcerative colitis ever since. And vaginal ulcers. I get regular crops of them now along with everything else.

For my Rheumatologist, this was the last piece of the jigsaw. The onset of colitis and genital ulcers convinced him this must be Behcets. Life continued with a weekly cocktail of Methotrexate, Sulphasalazine, Celecoxib and analgaesics, alongside intermittent injections in whatever joint flared and things were as good as they could be until 2009. That was when I started with jaw problems. A year later, following a first bout of surgery, I had bilateral Total Jaw replacement surgery in October 2010. It turned out to be Avascular Necrosis in both jaws.It was tough, really tough, but following the surgery, I felt I had my life back and the nine hours of surgery and months of rehabilitation had been worth it.

But here’s the rub. You see the thing with Behcets; just when you think you’ve turned a corner, or believe things are looking up, something else happens, and BANG! - it smack's you round the chops – and before you know it, there’s something new to deal with. Some other battle to fight. Over the last year my condition has deteriorated again. Last October I did a swim challenge for Arthritis Care with my son and raised £730. Yet now, I wouldn't be able to get in and out of the pool, let alone swim, the pain is so severe in both shoulders, my chest and neck. Hip and feet pain means I presently need a stick to help mobilise. Oh, yes, and my jaws are failing. The pain is back – not quite as severe as it was before my replacements but it's worsening and my mouth opening is down to just over a centimetre. The worry is, the Avascular Necrosis may be spreading further in my jaw/skull.

There’s no such thing as a good day. There are no long periods of remission as there used to be thirty-five years ago. Since last July the flare-ups of ulcerative colitis and the vaginal ulcers have been much worse. Sorry, we British don’t like to mention the word, 'bowel,' do we? Or think about vaginal ulcers. But please imagine the scenario I faced a few weeks ago when everything was flaring and I couldn’t dash upstairs to the toilet quickly enough. How, with the pain in my shoulders and hands, I struggled to pull my trousers down and couldn’t clean myself and found it difficult to even get into the bath to shower. Sorry to be so graphic. But people don’t see that. No-one can truly understand unless they have Behcets disease or some other chronic auto-immune condition and live with the range of symptoms day in, day out.

But I'm lucky. Following these recent problems my Consultant referred me to the new Behcets Centre of Excellence in Birmingham. Wow, what a set up. Anyone with even the slightest mention of the diagnosis, Behcets Disease, please insist on obtaining a referral from your GP or Rheumatologist. There are only three in the country. It’s a wonderful facility. I saw four different Consultants in one day along with two specialist nurses. And I'm pleased to say, thirty-five years on I have (she says, almost crying at the emotion of it all) a definite diagnosis of Bechets Disease. My Rheumatologist was right. And I wasn’t neurotic after all.

The plan is to start a clinical trial of anti-TNF medication - probably intravenous Infliximab - every six weeks for a year to try and 'dampen’ the Behcets and reduce the need for more joint replacements. However we can’t go ahead with that until I find out if it’s Avascular Necrosis in my shoulders and whether they need replacing or if my jaws require more surgery. The MRI is booked for a couple of weeks so hopefully, I’ll soon know.

I’m forty-seven years old now. Some days I feel like an eighty-seven year old. When you live with a chronic condition the future is always uncertain so I’ve learnt it’s no good looking too far into the future or trying to plan too far ahead. Tomorrow I should have been going on holiday to Italy but had to cancel due to my health. Hey, remember what I said about hindsight? If I’m honest, it was always a little ambitious.

Perhaps for the first time in many years I’ve learned to ‘embrace’ my condition. I have a lodger – Behcets disease – I can’t change it. I can only accept it and try to manage the best I can. Oh yes, and stop being so proud and accept my limitations! People don’t see pain. You look alright. You try to smile through the pain. What’s the good in moaning? No-one likes a moaner. So you get on with it. What else can you do?

One thing for sure, anyone out there with Behcets disease or any other similar chronic auto-immune condition, don’t give in. And if you're looking for diagnosis, don't take no for an answer. Take it from one who knows. Stay strong if you're suffering. Be kind to yourself and try to find others in the same situation. There are plenty of on-line forums and support groups for various ailments and diseases. And for those of you with Behcets, Arthritis or suffering from chronic pain, I'm always here. You are not alone...

Until another day
xx

ps - I've given as much information here and detailed as many links as I could but if you need any further info or contacts, feel free to ask.

Positive vibes welcome. Please

Tomorrow, Tuesday,7th June,I find out whether I have Endometrial cancer.

I tell you this because earlier this week, I watched a documentary about Joseph Merrick, better known as Elephant Man, and how he lived for his short twenty seven years with the terrible affliction of Proteus Syndrome. Speculation still surrounds his death and whether it was accidental or deliberate on his part. And as I listened to the programme it struck me how his infirmity must have affected him, living with it day in, day out, and I found myself empathising, understanding if he did stage his own death why he might have done so.

Don’t get me wrong, I’ve never encountered anything like the physical difficulties or prejudices Merrick had – in fact, the outsider would never know from first glance anything was wrong with me. But living with Behcets,an auto-immune disease means there’s always some new health hurdle to contend with and I can totally understand how someone who lives with terminal illness, or chronic pain or illness might decide they’ve had enough.

Pain has been my lodger, my cross to bear (or ignore) for the last twenty five years. There's always something. Usually it's arthritis but I also experience colitis, ulcers (mouth and vaginal,) or some other aspect or by-product of the treatment for my condition. I've had septicaemia, avascular necrosis, miscarriages. The latest development is some sort of vascular problem with my hands, feet and head which I'm seeing my Rheumatologist about in a couple of weeks. Six months ago, I thought I’d tackled the biggest obstacle with the jaw replacements and hoped there might be a little respite for a couple of years. However, it seems Mother Nature has other ideas.

I’d ignored ‘women’s problems’ (constant, heavy bleeding and niggling stomach cramps) for months and put it down to the stress of the surgery, perhaps my system lashing out, or maybe being forty four years old I was simply a menopausal old bag! Eventually, I relented to hubby's badgering and went to see the GP. As a result, for the past few weeks I've had all sorts of investigations which have found an enlarged uterus, abnormal blood and smear tests, and in between, you may recall we had to cancel a trip to New York in March because two days before we were due to travel, I ended up in A & E with crippling stomach pains. As I lay in that A & E bed, I turned to my hubby and meant it when I said, ‘If it is cancer, I don’t want to have treatment. I’m weary. I’ve had enough.’

To be fair the hospital has moved quickly and after more delving, a couple of weeks ago I had a biopsy to test for Endometrial cancer, the most likely cause for my symptoms. In my heart, I don’t think it will be and even if it is the ‘C’ word, the prognosis is good if I have a full hysterectomy and chemo/and/or radiotherapy. But do you see what I mean? I thought I’d come through one big, bad lot of surgery; of life being on hold, cancelling holidays and experiencing pain so bad, I literally used to writhe in agony on the sofa. If it's not cancer, months of treatments may lay ahead and if none of them work there could be the same end result - a hysterectomy. And what really peeves me is whatever the outcome, as sure as night follows day, something else will come along. It's the nature of the beast that is 'auto-immune disease.'

Hubby and my boys have years ahead to enjoy their lives. Do they really want to carry this sickly, relentless burden around for the next thirty, maybe forty years? And am I not entitled to decide when I've had enough?

NO. As one of my best friends pointed out, I’m a mother and with that role, there is obligation and responsibility to my children. There isn't just me to think about. I have to carry on doing what I do best - fight - whether this is cancer or just another manifestation of the Behcets.

I’m in a perfectly lucid and rational mood - I promise - so please don’t think this is me being depressed or feeling sorry for myself. I don’t want tea and sympathy, although some positive vibes for Tuesday might help ;)

I suspect only those who live with chronic pain or illness will truly understand what I’m alluding to in the above. Perhaps if you read this and it means something you might leave a comment so that those close to me don't think I've gone completely bonkers, and that I know I'm not the only person who wishes in today's modern world we had the right to choose when and how we might turn the lights out.

We all deserve to be able to say, 'Enough is enough,' don't we?

Until another day

Bye for now
xx

'E' is for ... EXERCISE

Exercise is a four letter word, isn’t it?

Well, some forms of exercise are ;)

- L-e-a-p, j-u-m-p, lift, flex… :)

Sound too energetic? How about swim? Or walk.

We all know that exercise increases fitness levels and helps you lose weight. But did you know for many chronic pain sufferers, exercise can improve mood, give a general feeling of well-being and actually help control pain levels?

The reason for this is Neurotransmitters, remarkable bodily control and functioning mechanisms. One of these neurotransmitters is endorphins - powerful hormone-like substances produced in the brain that function as the body’s own natural feel good chemicals and painkillers. And scientists have discovered that during physical activities - including sex -but exercise in particular, the body releases endorphins which can produce feelings of euphoria and a general state of well-being so powerful, it can actually mask pain to the same extent as morphine can.

In addition, exercise releases adrenaline, serotonin, and dopamine which work together to make you feel good, and it decreases stress hormones such as cortisol.

The problem I’ve had recently and alluded to in recent posts, is that I’ve lost my mojo and I need motivation to exercise. I won’t beat myself up that I’ve let it slide recently because I had a good excuse having major surgery. But it's time to get back in the saddle, so to speak.

This A-Z challenge has given me a bit of a buzz again for the first time in months. Positive thinking and laughter provoke the production of endorphins, the same as taking a walk during a sunny day or meeting an artistic person does. And I can see it’s the endorphins, my natural feel-good hormones that are kicking in. The challenge has got me focused and motivated, writing again EVERY day, and with the encouragement and support I’ve received from fellow bloggers, it’s really spurred me on. THANK YOU.

I believe in exercise and the power of endorphins. Exercise has kept me out of hospital for the last ten years. And it helped me tremendously last year while I waited for surgery. TMJ pain was the most incredible pain, like no other pain I've ever suffered. And I’m sure one of the reasons I coped so well and have recovered from major surgery so quickly was because of my level of fitness and the positive outlook.

My next step is to get exercising again. It can't be a marathon, or a run at all for that matter. I can’t do anything high impact - it must be strictly non-weight bearing or it causes flare-ups - and I can’t push myself too hard or too fast for the same reasons. I can’t afford to mask pain so I will listen to my body. I know from experience that all it takes to promote those endorphins is moderate amounts of exercise to get effects.

Swimming and cycling are my thing, and Yoga is perfect as it reduces tension and stress and focuses on stretching, breathing, and motion that release negative emotions in the body.

So, there you have it – my‘E’ is for Exercise... and Endorphins.

Until another day
Bye for now
xx

I'm still here. Kind of.

I am in limbo. I’ve been like it for months; floundering, poised up on the top of the hill in my barn, I sit at the island and look out in a state of suspended animation. I am still waiting for the bilateral TMJ replacement surgery. Sorry, I’m conditioned to the medical terminology after a year of injections, investigations and unsuccessful surgery. What I mean is both jaws are to be completely replaced.

“Too much talking,” my husband jests. Not any more. My precious talking. Lordy, how I miss it. And eating, sleeping and yawning. I hardly go out. I’ve tried, but I only suffer afterwards, and I’m not the best company at the moment. I hate to moan but I do anyway. It’s so unlike me. Twenty-three years with Behcets disease, and I’ve never given in before. Having chronic pain can be wearing at the best of times but being in constant pain in my head, jaws and ears is all-consuming. Imagine the worst toothache, earache, abscess, neuralgia pain you have ever had. That’s what it’s like day in, day out. So I hermit; I sit, and wait for the replacements to be custom made. Imagine, in a few months time, I will be walking around with jaws that were made in the U.S.A.

A few of you have missed me and for that I am grateful. I miss me. Some days a catch a glimpse of my old self – she comes out and gives me a swift kick up the derriere and tells me, “Stop feeling sorry for yourself,” “Don’t let the ‘black dog’ get you,” “Think of all the people worse off than you.” I tell you who I do miss – Woozle. She would tell me what to do.

Since I finished the (third) re-write of Tango Man I have crashed creatively. The second novel has stalled. I have a trio of novels in my head which, if I gave them half a chance, could become a Saga trilogy but I don’t have it in me to get them down on paper. I have a couple of unfinished short stories that I intended for the women’s magazine market. Oh yes, and I keep thinking about writing a non-fiction book about 'Coping with Chronic Illness and Pain.' However, all I do is think about it, then I change my mind because I don’t think I’d set a very good example for someone who fights long term illness and pain and copes when I don’t some days.

For those who are interested, 'Tango Man' is now being critiqued under the Romantic Novelists Association New Writers Scheme. And hey, I’ve written a blog. Think of all the positives. It’s only taken me five months. Surely, I won’t have long to wait for some news from my Consultant. We’re hoping August for the surgery. It doesn’t seem that far away now. Maybe this is the beginning of the great fight back. I’m known for them, but then again...

Until another day

Bye for now
x