Wednesday, 24 February 2010

The stuff that dreams are made of

Just after promising more regular posts, I once again disappeared without trace but this time I make no apologies, as I have the best reason in the world ...

I am delighted to announce that 'Flint Leonard Seale' our beautiful baby boy was born safely on 11th Feb at 05.35. To say we are 'over-the-moon' is understatement of the year and even two weeks later we still have to pinch ourselves to believe it is true!

I was incredibly lucky as, as I explained before, many of the symptoms that make pregnancy a particularly challenging time for 'loopies' are not ones that affect me; but I am pleased to say that the problems that did arrive were managed carefully by the excellent team of doctors and midwives looking after us, so both Flint and I emerged from the whole experience in good shape.

With hindsight and experience I have gathered some thoughts on things I believe help me get through pregnancy and birth that I will post next time in case they are of help or interest to other 'loopies'.

With our little 'bundle of joy,' who has already established himself as 'king of the castle' in our house, time has become incredibly limited (I am still working out how to find time to brush my teeth and get dressed each day, let alone anything else!) posts may be few and far between for a while, but I will be around so keep your eyes open and keep in touch. I may also see if I could enlist some guest Living Well with Lupus bloggers to offer their contributions.

In the meantime I need to find a Living Well with Lupus 'moral' to this post.

I guess it has to be: however bad things can be sometimes with lupus, never allow it to make you doubt or give up your dreams and hopes. After all ... "you've got to have a dream because if you don't have a dream, how you gonna have a dream come true?!" - mine certainly did with the arrival of Flint, my little 'spark of light'.

Saturday, 6 February 2010

‘Hats Off’ to the Dr Hajela’s of this World!

Finding a doctor ‘packed’ with the right qualities makes a world of difference to Living Well with Lupus ...

Last week I went for my routine appointment with Dr Hajela, the Rheumatology Consultant whose care I have been under for some years now. At the end of a positive consultation which confirmed the continuation of the recent improvement in my health lupus-wise, Dr Hajela informed me that he and his family are moving away from London so he will no longer be working at Lewisham Hospital. In other words: he will no longer be my consultant.

When I heard this news, whilst I was very pleased for him and his family, from a personal perspective, I was very sad and to be honest, somewhat unnerved. The reason is that I can honestly say that Dr Hajela has played a vital role in enabling me to obtain a good quality of life and to achieve a degree of stability that once seemed may never be possible; not to mention that we (me, my husband and my family) are acutely aware that it was his brave professional decisions at critical times that saved my life (in the most literal sense) on more than one occasion.

Talking to other ‘loopies’ reveals that the period before lupus is formally diagnosed is very often one of the hardest because an array of seemingly unrelated symptoms plague you on and off, some of which you dismiss yourself or put down to other things and within the medical profession, you are passed from ‘pillar to post’ often feeling disbelieved or as if you are ‘making a fuss’ or that you are being dismissed as a ‘hypochondriac’. With a condition that is as complex and difficult to diagnose as lupus, it is often not until you are lucky enough to come across a highly competent doctor who takes you seriously that you can get a handle on what is happening and do something about it. For me, Dr Hajela was the man who did this. By simply believing me and working continuously to help throughout the ups and downs, he has been a rock for me during the most difficult times of my life.

Ultimately it is excellent doctors like this that play a huge part in enabling people with lupus to ‘live well’, so I thought it might be helpful to try and identify the qualities that make the difference. I found that for a doctor that is going to move you forward, what you are looking for is one like Dr Hajela that combines the whole ‘PACK’ of skills. These are:

Caring and Compassionate

Although having read this list you may think it sounds a bit simple or even excruciatingly obvious, in reality finding doctors that actually embody all these qualities can be difficult. They can sometimes seem like a rare breed but Dr Hajela taught me that they do exist and over the years, where necessary, he has also referred me to other specialists who I find similarly equipped with the same particular ‘PACK’ of skills. Such doctors are a credit to their profession.

As sad as it is to be losing Dr Hajela when we concluded our final consultation last week, we both agreed that in many ways it couldn’t be a better time for a ‘farewell’. He leaves knowing that for this patient at least in many ways his work is done. I am no longer ignorant about having lupus and have been taught to watch out and respond to the signs myself so it never need escalate out of control as it once did. He has identified the best set of medications to control my symptoms and I am now able to lead a life that is not completely dominated by lupus and I am at the end of the final trimester of what has amazingly been described as an ‘unremarkable pregnancy' (!) so in a few weeks, all being well, we will be embarking on a new family life. Without Dr Hajela’s help and support it is highly probable that Tony and I would never have had the chance to fulfil this dream.

Many thanks and good luck Dr Hajela!