‘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:

Professional
Accessible
Caring and Compassionate
Knowledgeable

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!

Little things, big difference

Looking back, working out how to ‘live well with lupus’ has taken yonks, and really it’s an ongoing process: I’m always looking for ways to make life with lupus work better.

Still, without a shadow of doubt, over recent years I have become much better at it and lupus features far less centrally and aggressively in my life than it was before. Thinking about how this has come to be; whilst there have been the ‘big milestones’ of change such as getting proper diagnosis and developing a more accepting and realistic attitude; there have also a few little, often seemingly trivial things that have really helped improve things significantly.

Here I list 10 of the ‘little’ things that have made big differences in making my life with lupus much easier :

1. DVD box sets
Ideal minimal effort distraction anytime, but especially when lupus forces any social life out the window and perfect for getting 'lost' in another world when you are fed up with your own! We’ve happily lost ourselves in Lost, 24, Six Feet Under and even The Barchester Chronicles! At the moment it’s The Wire ...

2. Help with cleaning
I was always embarrassed about getting help with cleaning (especially as, thanks to my Granny’s genes, I’m a bit of a cleaning-obsessive) and I felt it was something I should be able to do myself. Nonetheless, once the realisation dawned on me that in a situation where energy is such a precious commodity and that it’s a tragedy if every bit of it is used up on household chores and contributes to a worstening health situation; I felt a whole lot better about getting some help. Having someone to helps give ‘peace of mind’ at times when it starts to feel impossible to keep up with the pace of life. If money is an issue and regular domestic help is out the question, it's worth just getting someone in on an ad hoc occasional basis when you are really struggling, or seeing if a friend or family member minds giving you a hand around the house next time they ask if there is anything they could can do to help. It removes a pressure you could really do without.

3. Dispensing medicines for the fortnight ahead
When I started to put an hour aside at the beginning of the week, once every two weeks, to dispense my daily medicines for the fortnight ahead, it really allowed me not to have to spend so much time each day thinking about lupus whilst riffling with different drug boxes. Now I barely think about it at all as my medicines are ready to take each day, I just swill them down with my tea at breakfast and it’s as routine as brushing my teeth.

4. Getting email addresses for doctors
This was a revelation I stumbled across accidentally but once I did, I discovered that making contact with consultants and GP’s needn’t be a painful experience. If you can get hold of an email direct to your doctor it is great. You know your message will be read by the right person and you don’t have to waste hours having unsatisfactory conversations with moody medical secretaries, wondering if your message was ever passed on. Now I get satisfactory answers to my questions sent directly to my inbox without any hassle.

5. Disposable hand & foot warmers
If you have Reynaud’s: get some. Quite simply they are the best answer. They keep you warm, save you embarrassment and, all-in-all, in winter I never leave home without them.

6. Finding an excellent hairdresser
When you feel rotten, the last thing you need is to look rotten. Someone who can make you feel better about how you look, and who can help even when the situation is dire such as when your hair is dropping out, is worth their weight in gold. In terms of improving my wellbeing my hairdresser Kate is arguably ‘up there’ with my best consultant! It is also for this reason I am a huge supporter of Trevor Sorbie’s new charity ‘My New Hair’:

http://www.mynewhair.org/

7. Prescription prepayment card
If you live in the UK and have lupus – get one. I discovered it saves a fortune.

8. Doing something nice for someone else
Since lupus started putting obstacles in my way I’ve had to rely on the patience, kindness and generosity other people far more than I did before and far more than I feel comfortable with - after all, I always prided myself on being an independent kind of girl and someone who likes to help other people. I’m sure many a ‘loopy’ can relate to this. I now find that by consciously doing simple acts of kindness, however big or small, even when I'm low, helps ease this sense of imbalance in relationships a bit. I find that even something as small as smiling at someone warmly or looking people in the eye and thanking them properly, sending a card to a friend out the blue or listening to someone who needs to talk, makes me and them feel at least a small notch sprightlier, and such things are easily possible even when you are at a low ebb.

9. Yoga ‘Circle of Joy’ sequence
As you know, I believe yoga is highly beneficial for lupus and this easy little sequence of yoga postures combined with proper breathing can be done seated or standing and helps with all sorts of things that often affect ‘loopies’. It is calming and stabilising (try it next time you are feeling worried or panicky), and it reduces tension, loosens the shoulders as well as providing relief from headaches.

The only demo I can find is posted on You Tube by an Ozzy yoga school called Ten Toes, but remember it can also be done sitting on a chair or standing (and you are not obliged to have to have ethnic music and statues in the background!) :

http://www.youtube.com/watch?v=UzQ_qWAEQbo

You can also find it clearly explained in a book by Peter Van Houten MD & Rich McCord PhD called Healing Therapies for Headache Relief

10. Family Secret Santa
The festive season is approaching and whilst I abhor ‘bar-humbug-Christmas cynicism’ I must admit I do find it challenging from a lupus perspective. It gets so busy - dauntingly so; and comes with a high degree of pressure to fulfil lots of expectations; and, it’s all at a time when winter bugs are rife.

A couple of years ago my family started a ‘Secret Santa’ system, which in spite of my initial scepticism, has worked brilliantly. We each buy one significant present for another member of the family, either a surprise or a specific request, rotating each year. The result is, as well as reducing the stress of Christmas shopping for loads of presents, we now each get something we really want, as opposed to lots of what often ultimately becomes 'charity shop clutter', because your buyer’s entire Christmas budget is spent exclusively on you! I’ve got my sights on a rather stylish handbag this year ...

So, they are just some of the ways I've discovered how little life ‘tweaks’ can make big differences ... how about you?

Cautious Optimism

Perhaps one of my first pieces of advice to anyone newly diagnosed with lupus is to be highly wary of anything you read on the internet, especially regarding ‘miracle cures’. It is a simple fact that, as yet, a cure does not exist (if there was I’d be straight onto it – wouldn’t you?!) and there is no one natural, chemical or dietary ‘answer’ to SLE, whatever bold claims are irresponsibly made in cyberspace. The sad truth is such claims are usually made to get some money out of you – you have to buy a book or some pills or something - and I think they are designed, intentionally or not, to exploit people when they are feeling vulnerable.

It is with this in mind then that I am always very cautious about trusting new medications that are as yet unproven, but there are two developments on the pharmaceutical front that have been drawn to my attention that I feel may warrant at least keeping a cautious but hopeful eye over. This is because both drugs (‘Lupuzor™ and ‘Benlysta™’) have been developed and tested by what are I believe are well known and reputable pharmaceutical companies and both seem to be reporting very positive results in clinical trials

Check out:

http://www.londonstockexchange.com/exchange/prices-and-news/news/market-news/market-news-detail.html?announcementId=10279990

http://www.lupusresearch.org/about/press-room/press-releases/new-study-findings-represent.html

So, whilst there is still a long way to go and it is worth remembering drugs often fall down at the last hurdle revealing fundamental flaws, I think it is reasonable to keep our eyes open to the progress of both these trials. Anyway, at least let's keep our fingers crossed because it is always nice to feel there is a glimmer of hope, especially on those more challenging days. After all, as my personal favourite ‘dude of the moment’, Thich Nhat Hanh the Vietnamese Buddhist and activist, says:

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

Yoga and Lupus: An introduction

Why 'loopies' should be prescribed yoga

Anyone reading this blog may well have picked up on my enthusiasm for yoga, so I thought it was about time I put something into words to explain why I ‘harp on’ about it so much in this blog.

My Mum practiced yoga when I was a little girl so I grew up with it, although in truth I didn’t start practicing regularly myself until my late 20’s, but my awareness and appreciation of it certainly far predates my knowledge and experience of lupus. As I’ve never been an especially sporty type what originally attracted me to yoga is that it is so inclusive: it’s is not the exclusive domain of the fit and gorgeous! What is wonderful is that it’s for anyone and everyone, and can be practiced anywhere and at anytime (or all the time when you really get the hang of it!). I’ve always liked the fact that it doesn’t matter how young or old you are, neither does it matter what your background or personal beliefs are; nor (as I was to discover to my relief) does it matter how ‘healthy’ or ‘unhealthy’ you are. Yoga recognises that everyone is unique and different and can be tailored to the individual whatever their situation. And thankfully, unlike many regular exercise classes, I’ve always appreciated that yoga doesn’t embrace a ‘no pain, no gain’ philosophy. In fact it’s quite the reverse: it is about listening to the body and working with it.

From the start the general health benefits of yoga were also attractive. On a physical level, amongst other things yoga has the ability to help create a more toned, flexible, and strong body, to improve respiration, energy, and vitality, to help maintain a balanced metabolism, promote cardio and circulatory health and relieve pain. And, with practice, yoga is proven to have a hugely positive effect on emotional and mental health. Regular yoga practice often helps the student start to find an improved ability to relax and handle stressful situations, to focus their energy and attention more effectively, to think more positively, as well as developing greater self awareness and of the world around them. Who could knock all that?

But when lupus made its unwelcome entry into my life, yoga took on a whole new meaning. I eventually learnt that practicing yoga was quite frankly invaluable to the point that now, if I had my way, I would insist that yoga was formally prescribed by doctors along with the necessary medicines to everyone with lupus. This is because in my view there are certain core issues to living with lupus that the fundamental practices and philosophies at the very heart of yoga address. For example:

Individuality: As we know lupus is a very individual disease which is partly what makes it so complex: although the root of the problem may be the same for everyone, the symptoms rarely are and even for the individual the symptoms change and vary greatly day-to-day and over time. This is where the flexibility of yoga comes into its own for us ‘loopies’. As I explained earlier, yoga is flexible so it can be adapted to meet the needs of anyone with lupus regardless of how it is affecting them (or not) at any given time, so they can continue to practice and address the issues affecting them as and when they occur. Throughout my problems with lupus including during some of my more poorly moments, I learnt I could use yoga in some form or another to my benefit.

Energy: Lack of energy is the blight of many a ‘loopy's’ life and is one of the more persistent problems. Working on creating, distributing and maintaining a healthy balance of energy and vitality (or ‘prana’ as it is known in yoga terms) is core to yoga practice and philosophy.

Flexibility and mobility: Arthritic aches and pains and flexibility are another more common lupus symptom. The gentle physical postures of yoga are proven to ease the aches and pains and improve flexibility. In spite of the impression you may have of yoga based on the misleading pictures of contortionist bodies twisted in fancy positions that are bandied around, yoga is not just for acrobats. I am certainly never going to be a bendy type of person, but thanks to yoga at least I have now restored a comfortable and respectable range of movement, my overall flexibility has certainly improved and the joint aches and pains are no longer a permanent feature of my life.

Relaxation: Stress is known to be one of the main triggers of lupus and stress and depression can also be consequences of the disease. Yoga helps us manage these things and when practiced often can help prevent them before they occur. Certainly for me I’ve discovered the equation is simple: less stress = less lupus. ‘Yoga nidra’, is a technique of yogic or 'psychic sleep' which induces deep relaxation and has the potential to help ‘loopies’ chill and manage stress. I recommend the following CD that you can try it at home as a good place to start:

http://www.yogamatters.com/product/659/cdpragynid1/deep-relaxation--yoga-nidra--vol-1.html

Pain management: Physical pain in various different shapes and forms is a common feature of having lupus and yoga teaches us techniques to manage it. A particular example in my own life that springs to mind is that I find that yoga breathing and relaxation techniques help me cope better with nasty procedures such as lumbar punctures and blood tests there are also a number of yoga postures I use to help relieve particular symptoms such as headaches.

Psychology: Much of Living Well with Lupus is about how we learn to adapt our minds to cope with the complexities of lupus. I, for one, was taken aback by the psychological impact the disease had on me when it got really out of control. Now, whilst yoga is often thought of as a mode of exercise popularised by particular celebrities, it is in fact far more. Yoga is a healing system of theory and practice: not just a set of exercises but an entire philosophy of being with the goal of achieving peace of mind and of body. I understand it as an approach to life that seeks to help the individual find a way to focus on being at one with themselves and the world around them; in lupus terms yoga can help provide a kind of constant impenetrable internal health that exists regardless of the unpredictable antics of the lupus.

Perhaps the best and most succinct explanation of how yoga can help us live a better life with lupus (or indeed without it) comes from B.K.S. Iyengar, one of the world's greatist living yoga masters explains:

“Yoga teaches us to cure what need not be endured and endure what cannot be cured”

So, I’d strongly advise anyone with lupus to give it a go. What have you got to lose? If you do decide to give it a go, it is worth noting that there are lots of different styles of yoga and classes vary greatly (I’ve been to some that are a bit too ‘out there’ for me to take seriously) but as with everything, tastes vary! So if you don’t like the first class you go to, it is definitely worth trying another. I’d personally recommend looking for either a ‘hatha’ or ‘Iyengar’ class although I reckon that ultimately a lot of it comes down to your opinion of the teacher.

NB The picture at top is me enjoying a spot of yoga practice at the top of a hill in the Peak District this summer!

Beating the Bugs

More hints and tips for avoiding Swine Flu and other ‘nasties’

I wrote about my attempts to avoid infection back in January (‘Getting Bugged by Bugs’) but the issue is very much back on my agenda again for three main reasons:

1. I have just taken six weeks to get over a very minor cold. Although I thankfully managed to stem off any serious lupus symptoms with changes to my medication the cold definitely caused my immune system to spark, and therefore my lupus to stir. This is obviously a reminder of the potential that a more serious infection could have on a loopy’s wellbeing.

2. I’m pregnant

3. Next week I am off on a much anticipated girly trip to Ireland for a few days to visit a close friend who has just had her first baby, but I am rather nervous about the potential to catch something on the plane.

Maybe all this Swine flu fever is making me paranoid but not without reason. When I’ve been out and seen the number of people carelessly sneezing, coughing and ‘spraying’ without even attempting to keep their germs to themselves, instead of feeling compassion for their poor health as really I should, I feel like socking them one! The grossest thing happened yesterday when I was in the hospital getting my blood tests done. I saw a lady leave a toilet cubicle without washing her hands! It nearly caused me to wretch. I don’t care what she was doing in there: she needed to wash her hands! I am definitely behind the NHS’s ‘Catch it, Kill it, Bin it’ campaign:

http://www.direct.gov.uk/en/Swineflu/News/DG_177936

There are the obvious things and some other helpful hints I’ve been given on good authority:

Hand hygiene
Obviously – obsessively – I say no more.

Swine flu vaccination
The (reliable) word of authority is that loopies who are immune-suppressed should get the Swine Flu vaccination. The benefits outweigh the risks.For full details see:

http://www.lupus.org.uk/news/news_swineflu.htm

And it’s not just for you. If you are immune-suppressed your ‘household contacts’ are also eligible to be vaccinated as a priority in Category 3 of the NHS Swine Flu Vaccination programme. Needless to say, as soon as it arrives in the forthcoming weeks Tony’s straight down there!

For UK loopies, full details of the NHS Swine Flu Vaccination Program and the Risk Categories identified for priority are clearly outlined here:

http://nds.coi.gov.uk/content/detail.aspx?ReleaseID=407719&NewsAreaID=2&HUserID=893,776,884,851,780,684,710,705,765,674,677,767,684,762,718,674,708,683,706,718,674&ClientID=-1

Being immune-suppressed and pregnant I fall into more than one category.

Avoid touching your face
The flu virus has to get into the body somehow to grow and the most effective way is through the nose or mouth. Any infection carried on your hands is automatically transported to your eyes, nose or mouth every time you touch your face.

After having been given this advice a couple of days ago I've discovered that that this one is much easier said than done. Try it for yourself. I’m hoping it's a case of 'practice makes perfect'.

Vicks First Defence Nasal Spray
I advocated this (albeit with a degree of scepticism at the time) in my last post on beating infections and I do again with a bit more confidence as I’ve been told that it is far more effective than face masks, which can in fact make matters worse. (Yes, I'd got to the point where I was seriously considering wearing a face mask on the plane - I'm sure my travel companion Lorna will be relieved to hear I'm opting for First Defence instead!). The blurb says it works by "trapping the cold germs, making them harmless and helping your body to get rid of them naturally". Apparently the key is to use it properly. The way to do it is to be like Bill Clinton - don’t inhale! Allow it to trickle either down the back of the throat or back out your nose (lovely!) rather than inhaling it into the lungs where it has no affect. The key is it should coat your nasal passage.

http://www.vicks.co.uk/first-defence/nasal-spray/

It’s at least worth a try, especially on my plane journey.

Hot drinks
Drinking six to eight cups of fluids a day flushes mucus down into your stomach, where digestive juices destroy the toxins. Keeping the bodily fluids moving quickly out of the body gives a virus less chance to find a cosy place to grow and spread. Acidic drinks, like citrus juices and tea with lemon, also help to keep viruses at bay.

Another very good reason for putting the kettle on right now!

No more tears

Don’t you find that it’s often the little things in life that make the biggest difference? A couple of weeks ago I visited the optician for my routine eye appointment only to discover that the lupus (or rather the ‘Sjögren's syndrome’: the condition that often accompanies lupus, that attacks the glands that lubricate the eyes) has recently been affecting me to the point that he felt it may be too damaging for my eyes to continue wearing my contact lenses any longer. Now although this may seem like a very small sacrifice compared to some of the others that us loopies have to make to manage the lupus, I was especially downhearted by this one. I felt like ‘crying my last tears’ – literally!

I don’t wear my contacts everyday but like to have them for certain physical activities such as yoga classes and walking where glasses steam up and get in the way: but who am I kidding? In honesty I most appreciate them for purposes of vanity. Whilst I have a reasonably nice pair of specs which I am perfectly happy to sport during general day-to-day life, when I am getting dressed up to go on a date, meet up with friends or to go somewhere special, I can’t help but feel my glasses put a dampener on things. I find that occasionally feeling you can look your best, if only once in a while, helps lift the spirits no end.

So it was with great relief that on my return appointment this week after giving the contact lenses a rest for a of couple weeks and regular use of artificial tears prescribed by my GP (Carbomer Gel 0.2%), the optician has given me the go-ahead to wear my lenses, so long as it’s restricted to ‘high days and holidays’. I am happy with that.

And for those times in between, I intend to get straight onto the new ‘geek chic’ trend that’s going on right now, for which a pair of nerdy glasses are a definite must!

The boy that cried wolf

Having recovered from a cold I picked up, the lupus has done its usual and put in a bit of an appearance: a new rash on my back, ‘hurty’ patches on my feet and the base of my neck, some stiffness and aches in my hands, as well as the revival of the usual mouth ulcers and fatigue and perhaps most worryingly for me, the odd headache. I have also developed a kind of burning stomach sensation that I suspect is just a pregnancy-heartburn-reflux-thing but I am concerned to confirm this as my steroid dose has increased and this has caused problems with stomach ulcers in the past.

I have taken sensible lifestyle precautions such as cancelling appointments and getting plenty of rest but symptoms weren’t showing signs of improvement so last night Tony (my hubby) and I were debating what course of action I should take: should I contact the lupus consultant?, the specialist obstetrician?, the midwife team? or, (my suggestion) “leave it a bit longer and see how it goes until next Monday when I have a my next fixed appointment - after all, things might 'just get better'?”

The last suggestion didn’t go down well with Tony, who pointed out that "the ‘leaving it to see if it sort itself out strategy’ has often proved disastrous for us in the past where, far from getting better, symptoms have spiraled out of control and required dramatic treatment that might never have been necessary if we’d just ‘nipped it in the bud’ in the first place!"

In my defense I reverted to the words have popped out all too often in recent years “I just don’t want to bother them unnecessarily … I just don’t want to be like the ‘boy who cried wolf’”

Even just after I said it I knew it was very un-Living Well with Lupus

Drawing on the lupus / wolf connection Tony retaliated “But you are not making it up! It’s not like you are a bored shepherd boy with nothing better to do (!), ‘the wolf’ actually has confronted you (and does so a lot of the time) so you are justified in asking for help whenever it appears”. And of course, he was absolutely right.

At the end of the 'Boy that Cries Wolf' fable Aesop spells out the moral. I guess the moral of this story is that lupus is a REAL wolf and there is absolutely no shame in asking for help ... in fact it is the wisest thing to do.

Right. I'm just off to make that phone call now and if needs be, I urge you to too.

Avoiding appointment disappointment

I feel like dancing on the rooftop and shrieking with joy because something so strange and marvellous has happened. I have noticed that recently I have consistently started leaving medical appointments with a feeling of satisfaction

Yes, these days when I leave the consultation room after appointments with either my consultants or my GP I feel I have been heard, believed and given the best professional help available. Now, whilst I understand that your average person may not feel this is worthy of such a reaction of delight, because one might reasonably assume that this would not be too much to expect from a medical appointment, for many a ‘loopy’ this is often not the case.

Thinking back I literally get a shiver down my spine when I remember certain medical consultations. Other memories simply enrage me. There were numerous problems: feeling rushed, feeling that the doctor was distracted (one GP even took a personal call on her mobile in the middle of my consultation, so I sat there trying to come to terms with my new chemotherapy drug regime I was on, while she merrily planned her social arrangements for that evening with a friend!) or otherwise feeling the medical professional I was consulting was clueless about my condition. Feelings of intense frustration were also commonplace, especially when I was for a time undiagnosed after being diagnosed, only to be finally and satisfactorily diagnosed once again. But the worst thing of all I felt during these inadequate consultations was disbelieved.

When have enormous respect for someone because of their professional capacity, if they appear to doubt you, it is easy to doubt yourself. There were times when I started to believe that maybe I was just a hypochondriac as the attitude of certain doctors seemed to imply; maybe I was just imagining the headache and making a fuss about the other symptoms. It is odd to feel grateful for a seizure or for finding oneself unconscious in Intensive Care, but in some ways it did me a favour – it vindicated me, it got doctors to take me seriously and it confirmed once and for all I was no joker.

Having given the matter much thought, I have realised that there are a number of barriers which give rise to unsuccessful medical consultations and that blame lays at both the doctor and the patients’ door. I believe there are very few doctors who are truly ‘bad apples’, but there are a some whose bedside manner leaves much to be desired and rather more than there should be whose knowledge of lupus if very limited. This doesn’t have to be a problem unless they are one of a significant number that is dangerously constrained by professional ego. An otherwise decent doctor who is not fully au fait with the condition but who is open to learning is one thing, but one who is ignorant and arrogant is quite another; they can be very patronising and even dangerous. I have come across them all over the years.

Still, I recognise that patients can also make matters worse for themselves. Unless we allow ourselves to accept in our hearts that lupus is unpredictable, difficult to read and currently incurable we can go into our appointments expecting our doctors to be magicians who ‘wave their magic wands’ and instantly prescribe us the answer to all our problems. Sadly, the truth of the matter is there is no ‘one size fits all’ when it comes to treating lupus and doctors have to be given a bit of leeway. When I found a consultant that I felt respected me and was constantly endeavouring to try and help me find a way forward, I accepted a lot of what we had to do together medicine-wise was trial and error. Nothing he could do or prescribe was going to be perfect and provide a complete cure without side-effects, but with much ‘tweaking’ here and there, we were going to find the best possible solution.

This requires good communication which is another thing vital to getting a positive outcome from meetings with your doc. There have been times when I have had so much invested in a particular medical appointment, been so emotional and felt so much of my life rested on it that I have gone in and (quite uncharacteristically) found myself nervous, freezing up, forgetting to mention some of my key symptoms and to ask all my questions. I essentially turned into a passive, simpering ‘yes’ puppet! Realistically, when I was like this, how could any doctor be expected to deliver what I wanted and needed?

So what can we do to avoid these hellish experiences and start getting the best from our contact with the medical professionals? I have turned some of the things that I feel have helped me into the following list of tips

• Have all the relevant information about YOUR medical history to hand to help enlighten doctors you are meeting for the first time and to validate what you are telling them (recently, in an appointment of mine, a copy of recent blood tests, an old MRI scan and a letter from another consultant proved very handy)
  


• If you are going to a medical professional whose specialism is not necessarily lupus (e.g. A&E department, a GP) it can be handy to have some general information on the condition
  
• However infuriated you feel ... never get angry. This is guaranteed to piss-off the doctor, who will instantly write you off as ‘neurotic’!
  


• Be persistent
  

• If it’s not working, CHANGE doctor or ask to see someone else. A lot of people don’t seem to think this is an option, but it is and you can. It may mean a bit of compromise like travelling a bit further, but believe me it’s worth it. After suffering a GP-practice-from-hell I switched to a GP-practice-from-heaven and haven’t looked back. Why I didn’t do it sooner amazes me ...
  


• If you find a consultant / GP you like and feel you can trust, stick to them like glue – they are worth their weight in gold
  
  
• When you are too ill or emotional to fend for yourself or just not up to explaining, take someone with you as your ‘spokesperson’. In some of my darkest hours the formidable combined force of my Mum and Tony was enough for any doctor to reckon with ... but they got the results
  


• Show you are prepared to be reasonable and build a good rapport
  

Let’s not pretend that all this is easy. It has taken me many years and much work and support from my husband and family to get to a point that I’m happy with my medical care, but it is worth it. After all, getting the best from your doctors and consultants is vital to living well with lupus.

Taking the ‘ow!’ out of mouth ulcers

Mouth ulcers are a common symptom of lupus and one that for something so small can cause a great deal of misery

The mouth ulcers I get range from painful white spots on my inner lips and gums to large white patches covering the palate of my mouth (as in the picture) or inner cheeks of my mouth. I have tried various products on the market as well as some prescribed, so here are my top tips:

1. I find gel products slide around and don’t stick to the ulcer so opt for liquids, sprays and pellets that stay in place

2. Products I find helpful are:

Ambesol Liquid is an old favourite of mine as it numbs the pain entirely and allows you to eat and talk without pain. The drawback is that it really stings when you apply it, so prepare yourself!

I find Corsodyl Mint Mouthwash helps when it is impossible to brush my teeth properly as it maintains oral hygiene and prevents infection and gum disease, as well as easing some of the soreness. I have also just discovered Corsodyl Spray which is great for zapping ulcers that are lurking in hard to reach corners of the mouth

3. Certain foods should be avoided as the pain is eye-watering – lemons and tomatoes spring mind

4. Although they are a pain to use, when things have been really bad prescribed topical steroids have worked for me

5. Desperate times call for desperate measures: sometimes drinking through a straw, lukewarm soup, ice-cream, yogurt and jelly and avoiding hot drinks can be your only option

If anyone else has any good ideas, I am always on the lookout so let me know.

Getting ‘over the moon’ and weight gain factor

I’ve always had a healthy appetite but when my steroid doses increase I turn into nothing less than a mean eating machine. I am only 5 foot 2 and I often feel I could eat my husband under the table (not literally!): he is over 6 foot and a big lad. Personally, I find it is not exactly hunger though; oddly it’s just more a constant urge to eat. Weight gain is common amongst those taking Prednisone (especially with doses over 10mg) and as I’ve highlighted this includes a fair few ‘loopies’. The reason for the weight gain is that Prednisone causes the body to retain sodium and lose potassium. This combination can result in fluid retention, weight gain, and bloating. Furthermore, an increased appetite is another significant side effect for many.

And, as if ‘unfair’ weight gain (as I see it in these circumstances!) isn’t bad enough in itself, Prednisolone often causes the redistribution of fat, which makes any amount weight gain even less tolerable. The weight gain from Prednisolone tends to be located in the face (‘moonface’), back of the neck (‘buffalo hump’), and the abdomen (‘truncal obesity’). Aren’t these very words alone enough to make you cry!? To give an idea I have showed a ‘before’ (left) and ‘after’ shot (right) to demonstrate a bit of my moonface, but to be honest, I was reluctant to have too many photos taken when things were at their worst!

I continue to struggle, but have so far been relatively successful at keeping my weight down, although there are times when things have been worse than others in this department. Still, here follows the best advice I can give that has so far helped me.

• Firstly, Coldplay have it right when they croon “♪♪ nobody said that it was easy ♪”. It’s not. I guess this applies to many things in life, but certainly when it comes to trying to keep a waistline when you’re on steroids. So really that is the first lesson. If you want to keep your weight down, it is something that you have to permanently be aware of and act accordingly to avoid it.


• Then there is the obvious stuff: exercise and healthy diet. Obviously don’t go on a diet. They never work, at least not long term. Just make your personal diet a healthy diet. I don’t really need to spell it out as you’ll have heard it a hundred times before, but just in case I’m talking about basing it on, fruit, veg, beans, fish, rice, noodles, pasta, lean meat, tofu and lots of wholemeal stuff. Of course the odd blow-out and occasional treat here and there is a definite must, but rarity only heightens the enjoyment.


• And then there is my mantra: breakfast, breakfast, breakfast and especially anything with oats. I’ve said it before; I’ve just said it again. I won’t bore you any more with this
  
• No one wants a boring diet and I reckon the key to eating healthily but exceedingly tastily is to ‘chop till you drop’. Odd as it first sounds, if you learn to enjoy chopping it helps enormously, because once it is done you can make delicious food that is not only tasty, but not too bad for the waistline. Then if you find you need to eat a mountain, it doesn’t have quite such visible consequences. The chopping bit used to be what put me off cooking proper food and turn to quicker less healthy options. Weirdly enough, I’ve crossed the pain barrier and now I actually find it relaxing. If I sit and chop herbs, peel and slice veggies and fruit, grate lemon zest, ginger and nutmeg, mix bowls of homemade treats to the doldrums of my favourite music or radio shows I find a kind of inner ‘chi’ (one of the first pieces of key advice at the beginning of this whole Living Well with Lupus thing that you need to find your inner-hippy!)


• Someone in our research told us that if you have problems with arthritic hands (something I am grateful to have recovered from now but I had it for a while) there are implements to help with cooking and chopping that are worth investing in. For example, I like the look of this stylish ‘easy grip’ utensils set:

• http://www.allegromedical.com/daily-living-aids-c519/easi-grip-magnetic-rack-p500930.html
  
  My food processer also has attachments that are for slicing and grating.

• I find if you a chop and peel a lot of the things you often use in one sitting and put them in the fridge or freezer, it means is easier to make something tasty and healthy on ‘amber’ days, likewise with meals that you make too much of. If you make a whopping fruit salad with only your favourite fruits (illuminate the boring stuff) and leave it in the fridge it is great to have to dip into throughout the week.
  
• Try to keep only healthy snacks in your cupboard and on your person so when hunger strikes you can only but satisfy it wisely
  
• And here is my personal secret tip: when you get steroid munchies and you can’t help but eat in between meals, eat anything (healthy) that crunches: carrots, apples, celery, popcorn, rice cakes, radishes, sugar snaps, whatever - so long as it’s crunchy. This is just a personal discovery and I cannot claim it is backed by any scientific evidence but it certainly worked well for me in that I didn’t pile on too much extra weight. I reckon it might be because crunchy foods take more effort to chew, so whilst they satiate the compulsion to eat, a certain degree of energy is expended in the process itself simultaneously burning calories and giving the facial muscles a good workout – great for the old ‘moon-face’.

Anyone tries the crunching method I’d be really interested to know how it works for you. Also, any more ‘hints and tips’ you can post would be most welcome by me and others I am sure.

Prednisolone the friend and foe

Many a ‘loopie’ has to take Prednisolone at least at some point and often long-term, to control their symptoms - me included. If you don't take it now there is a strong likelihood it may be necessary at some point.

But Prenisolone introduces yet another lupus paradox: the very drug that saves your life (and let’s face it, regardless of what you feel about it, it does seem to help keep things in check) simultaneously messes you up in one way or another. The only way to describe my own feeling towards it is most definitely as a ‘love / hate relationship’ and I have found this is true for others too.

The alarming potential long term side-effects such as osteoporosis, diabetes or stomach ulcers are one thing, but the future is unknown and we can but hope for the best. Nonetheless, we are still able to take the best measures we can to help avoid such outcomes, such as taking calcium supplements, eating a healthy diet and taking medication to protect the stomach lining.

But it seems the more immediate and pesky symptoms that plague us in our daily lives are the ones that really bother us and give us a sense of righteous indignation. I’m talking insomnia, acne and weight gain for example, not to mention other common nasties like depression and / or ‘mania’. I can’t help but feel any of these is like adding insult to injury!

Still like it and/or loath it, until our dream ‘wonder cure’ is invented (and I am optimistic that one day it will) many of us have not much choice but to live with our ‘friend and foe’ Prednisolone if we want to keep the lupus symptoms under control. All we can do is approach it in a pragmatic way.

I suppose it goes without saying, first and foremost any side-effects should be discussed with your doctor, then take on board their advice. Beyond this, in order to reap the benefits of prednisolone, you have to seek out ways to cope with the side-effects and manage them as best as possible. My success in achieving this has varied depending on the particular side-effect in question. For example, each time I think I’ve cracked insomnia (the kind where after going into a deep sleep you wake up at an unearthly hour say 4.00am, as if you have an inner alarm clock programmed, only to finally drop off again 5 minutes before the real alarm goes off) for it to come back and start plaguing me all over again, so I am still working on that one. With others I’ve had more success. So it is my intention to do a post looking at each side-effect individually and considering how best to tackle it. I am going to kick-off with avoiding weight gain as this is the one that seems to affect most people to some extent and certainly gives rise to the greatest upset. Watch this space.

Getting bugged by bugs

I have been desperately trying to avoid getting an infection this winter but at this time of year when bugs are rife, simply leaving the front door feels like a health hazard.

Obviously, everyone is keen to avoid sickness bugs, coughs, ‘flus and colds, but for your average ‘loopy’ this time of year is a nightmare. Not only are we more prone to catching things anyway due to the abnormalities in our immune systems, the drugs many of us take open us up even further to infection (recently my drugs went into overdrive and virtually cancelled out my white blood cells entirely). And, if and when we do catch something nasty, it can lead to a lupus flare. All in all, it’s not great!

After bad experiences in the past and a better spell of health recently, I have been really determined to try and avoid catching anything, but this is easier said than done.

I tried putting myself in a kind of ‘quarantine’ by staying at home but could only keep this up so long: there were things to be done, places to be and people to be seen. Even when I did manage to ‘hide’ at home problems arose. My husband came home from work reporting stories of a whole host of unpleasant bugs flying around his office. One ‘loopy’ friend, who took part in the research, told me she was having a similar problem. In fact when her husband developed a cold she took to wearing a mask (usually used by decorators to avoid toxic fumes) to protect herself, and last I heard she was contemplating goggles too- she wasn’t sure what the postman thought when she forgot and answered the door in her protective wear!

When I did leave the house it was virtually impossible to find anyone who didn’t think they were infectious in some way and public transport felt like a death trap.

So far I haven’t got off scot free, but lighter than usual, but who’s to say for the rest of the winter. Fingers crossed. The only advice I can offer is obvious: where possible try to avoid infectious people and densely crowded places and be scrupulous about hygiene. Make sure friends and family know of your vulnerability to infection so they make sure not to come near when they have anything catching. Sleep separately from your partner when they have the ‘lurgy’. I have been using Cuticura Antibacterial Hand Hygiene Wipes to wipe anything and everything I suspect may be of potential danger including my hands, toilet seats, phones in the work place, hand rails in buses / trains (I have tried to be subtle so as not to offend others!), I have used anti-bac soaps and hand gels and also been giving Vicks ‘First Defence’ a go, in spite of my cynicism. So far, so good!

Apparently in Japan it is the norm to be highly conscientious about personal hygiene and you will often see people wearing face masks when they have a cold to prevent the spread of germs. Still, I can’t help but feel like I’m a bit of a prissy wimp. To get over this, perhaps we could try and start a fashion trend for the surgical mask like those worn in Hong Kong during the SARS epidemic as in the picture above ... mine’s the flowery one!

On my Soapbox

Hospital parking charges are adding insult to injury

Since the beginning of last week I have had to be in and out of my local hospital more frequently than usual due to a dramatic drop in my neutrophils and white blood count, which are now at an unsafe level. It is perhaps because I am now essentially in ‘quarantine’ and feel a bit like a caged animal that I have had time to brood on the issue of hospital parking fees.

Before every hospital visit, I have to scramble around to make sure I have enough change in my purse or go to the cash point and get a note to turn into change for the machine: hassle, time, stress.

As I am never entirely sure how long I am going to be, I always end up paying more parking fees rather than less to cover my back. The fine for not paying or underpaying is big and clamping is in operation. The machine gobbles the coins greedily. It is difficult to know how much money to put in because it is hard to guess how long the visit will take, sometimes there are delays, sometimes I am sent for tests, or to the hospital pharmacy all of which take extra time, but sometimes I am ‘in and out’ like a shot. I never know.

It seems that the system is designed to get as much money from you as it can. It costs £2 an hour. The other day to be on the safe side I estimated I would be an hour and half, so I put in £2.50. The ticket the machine produced, showed just one hour! Apparently, you have to pay £4.00 for one to two hours and there is nothing in between!

This cost and stress is nothing compared to what my family have had to go through during times I have been an in-patient, when they have spent hours and days at my bedside. Anguish and anxiety don’t exempt you from parking fines. There was an emergency situation when there were no parking spaces so we abandoned the car in a residential spot with a note explaining the predicament. I ended up falling unconscious in A&E and my poor mum who was with me in great distress, later discovered she had given a parking ticket to add to her woes. My husband also got a parking fine because he was late back to top-up his fees after another traumatic night with me in a desperate state. He got small satisfaction by calmly telling the warden who was issuing the ticket about the state he had left me in and inviting him to seriously consider what he had just done and how he would feel if it was his partner, then went on to wish him a good night’s sleep. OK, it is probably a case of ‘shooting the messenger’ but I think it made Tony feel a bit better at the time and hopefully encouraged the warden to think about compassion.

I use my experiences to illustrate the point, all the time knowing that this affects everyone. Most ‘loopies’ and their families are likely to have had similar problems and spent a small fortune on hospital parking – in fact anyone with any kind of chronic illness or ongoing health problem is in the same boat. All in all, it costs a fortune not to mention extra stress and hassle at a time people need it least!

Thankfully both Wales and Scotland have made the decision to scrap hospital parking charges, so it seems that this madness is now confined to England (and potentially Northern Ireland who I think are still in the process of reviewing it). And I thought we were supposed to be a ‘United Kingdom’?!

Anyway, in the spirit of the ‘proactivity’ and ‘assertiveness’ of a ‘loopy’ choosing the Living Well with Lupus path (and because I am climbing the walls stuck at home in isolation!), I Googled ‘hospital parking charges petition’ and found the following, and I for one am going to add my name:

http://www.ipetitions.com/petition/toscraphospitalparkingcharges/index.html

Managing Medicine Muddle

As I discovered the practical reality of having to take so many medicines each day can be a real pain and can eat up far too much precious time and energy. Here is how I got to grips with my medicine muddle ...

Most ‘loopies’ have to take some sort of medication daily. It is not unusual to walk away from the pharmacist with a shopping bag brimming full of what looks like a wonderful sweet shop of pills of different colours, shapes and sizes to take each day. However, clearly unlike the sweet shop an ad hoc ‘pick and mix’ approach is not a great idea when it comes to taking your medicines!

As I discovered for myself, managing medications on a daily basis can be very confusing and it is easy to get in a muddle, especially when you are either really ill, or busy. It can also be easy to forget to take it all, or to remember whether it was today or yesterday you downed that handful of tablets?! I found that getting through the obstacles of obtaining the medicines from the GP and pharmacist in the first place, then working out how much of each drug to take, and checking you take the right number of the right tablets at the right time all added to the confusion and the whole thing was a real hassle.

I know things got worse each time new pills were added to my repertoire and to make matters worse, additional medications usually corresponded with my lupus being worse and my energy and patience being lower. I used to riffle through a variety of packets and boxes every morning, assembling a little pile of pills next to me on the breakfast table, that I would often joke could be added to a bowl of milk and called my ‘second breakfast cereal’. Each time I just had to hope that I had done it right and hadn’t missed anything or accidently taken some sort of fatal overdose. Daytime and evening pills were more prone to being forgotten entirely in spite of my best intentions. It was all ‘a bit hit and miss’.

However, after this rather haphazardous approach and thanks to the ‘subtle hint’ gift of a pink pill dispenser from my ever-concerned Mum, I eventually managed to streamline the process and become far more adept at taking my pills as prescribed.

Here are some of my top tips to help make it easier:

• Prepare a personal medical routine preferably on your computer and update it each time there are any changes. This acts as a quick reference and helps you to be clear about what to take and helps you avoid making mistakes. Include drug name, dose, how many pills, what it is for and when to take it and make a note if any should be taken before or with food and when/if to alter the dose. It is also handy to take with you when you visit the doctor / pharmacist
  
  
  
• Use a weekly pill dispenser to allocate medicines at the beginning of the week. OK, it takes a little while to do, but if you set half an hour aside each week and use a print-off of your daily medical routine to help you (as described above) it pays off. For the rest of the week you no longer have to waste time fishing around, looking for and opening different packs and the chances of making a mistake are significantly reduced. Importantly, if you are a bit forgetful like me, it is a way of checking whether or not you have taken your pills that day. I bought mine from www.redidose.co.uk  and it has the advantage that each day’s pills are in separate containers labelled with the relevant day of the week (if you are away from home you just take those you need) and each of these is divided into ‘time of day’ compartments so you can divide medicines into the times of day they need to be take. All handy stuff!
  
  
  
• Keep a dose of crucial medicines in your bag so you have them at all times, so if you forget to take them in the morning and remember later you are able to take them immediately. It also gives you the freedom to make spontaneous decisions to stay away overnight without messing up your medicine routine ... after all, you never know!
  
  
  
• Sign up with a pharmacy that has a repeat prescription Delivery  & Collection Service. It is easy to realise when it’s too late that you have run out of an important medication and it is frustrating when you are spending far too much precious time to-ing and fro-ing between the GP surgery and pharmacy. Since I joined up my local pharmacy’s repeat prescription Collection and Delivery Service these problems have become a thing of the past. It goes like this: I send an email to my GP surgery requesting the medicines I need, two days later I get a phone call from my local pharmacy to say my medicines are ready. All I have to do is to pick them up from the pharmacy and on one occasion when I was very poorly, they even delivered them to my door! It’s as simple as that. I use ABC Pharmacy but there are others who offer the same service.

http://www.abcpharmacy.co.uk/corporate/branches/locator

• Consider buying a Prepayment Prescription Certificate if you don’t qualify for free prescriptions. When I came out of hospital with a new ‘shopping list’ of medication and found out how much it was going to cost me in prescription charges, I nearly fell over backwards! Thankfully, someone told me about the Prepayment Prescription Certificate and it has saved me a lot of money. If you pay for more than 3 prescriptions a month it is worth considering buying one. I pay £102.50 a year (and you can pay in instalments)

For details: http://www.ppa.org.uk/ppa/ppc_intro.htm