Page 37 - N&V Winter 2019

insurmountable problems. My problems not dations, do research about your condition, friend or family member who can help to
only caused by lupus, but also by the and the drugs used. interpret a consultation and fill in the
drugs that were essential to keep me alive inevitable gaps, because patients are
at the time. Are you satisfied that your prognosis could nervous and worried and sometimes just
not be improved?
I’ve had three new knees. I know there are cannot concentrate on what they are being
only two, but one of them decided to pack Make a note of the questions you want told.
up and had to be re-replaced, a new hip, answered during your consultation. Take with you an up to date list of
and a revision of this hip after 27 years, You can help yourself by feeling more in medications and the dosage you take and
and new shoulder, but even more signifi- control and able to also inform your family give the doctor a copy to keep. I also give
cantly, last July I had spinal surgery where of what is expected of you. Of course, the doctor a list of the surgeries I have
a most brilliant surgeon replaced a disc with the plethora of information available had and the dates they took place. This
with a titanium insert held together with on the internet this is easier, although it avoids the dreaded memory test which can
large screws. can also sometimes be quite dangerous. take up most of the consultation.
So I would say use with care.
Prior to this I had been virtually unable to Lupus is such a minefield of various
walk, using a wheelchair and was in Sometimes too much written information symptoms, pain and varying degrees of
continual pain. can be frightening, so I do feel that both, that each patient must be treated as
contacting your local group where you can an individual.
I had seen two surgeons prior to this
surgery who told me that the surgery make lifelong friends and talk with There is no ‘one cure for all’ and the
would be far too risky for them to likeminded people is very beneficial. perseverance of the patient as well as the
undertake and they referred me to pain Our CEO of LUPUS UK, Chris Maker and medical professional is essential.
clinics and a pain psychologist! As you his team, do an amazing job. They make
can imagine this was devastating for us sure that the magazine LUPUS UK News From experience it is very important to
to hear. and Views is published regularly and is regularly keep in touch with your GP. At
our surgery we need to make an
But my husband and I were not accepting full of help and advice. They also appointment three weeks in advance unless
this and Prof Hughes recommended a third organize and run Conferences and Get it is an emergency. I find it is worthwhile
surgeon, who explained what surgery he Togethers, plus the wonderful fundraising booking for three weeks ahead and then
would do and above all, he felt confident for research and education. cancelling it as early as possible if it is not
that it would be successful, and miracu- Their efforts make sure that the lupus needed. However, often it is needed to
lously it was. patient and their family is advised fully, update drugs, have blood pressure taken
Maybe after so many years of serious and feels part of the lupus family and the etc. She welcomes seeing me to keep
illness we have learnt a lot about standing invisible hug that that provides. Self-help abreast of my health and have no shocks
our ground, and not accepting defeat. groups are very important in this time of of flare ups. I have found seeing the same
Some might say that I’m rather stubborn!!!! such busy overstretched doctors and you doctor, if possible, greatly beneficial as
But I suppose just being here today writing do want to be fully informed when facing she knows what is normal for me.
this is a testament to that. your consultant.
As doctors get busier and busier with
I am telling you this story to encourage you For that reason, I believe it is imperative increasing workloads and appointments
not to give up, but do ask for recommen- that the patient is accompanied by a are harder to obtain it is imperative that
we help ourselves more, please join a
support group, join the online community
forum https://healthunlocked.com/lupusuk,
talk with likeminded people and then you
will feel more positive.
The lupus picture has changed dramat-
ically since I was diagnosed. The drugs
used are so much more effective in
treating you and with far less side effects.
There is always somebody to help you at
LUPUS UK.
The majority of people have now heard of
lupus, but if not please do take the time to
briefly tell them what lupus is.
Let’s never return to those earlier days
that I spoke of when lupus, in the
information available to me in 1978, was
just listed as a fatal disease, and to most
people meant nothing at all.
How different it is now.
I’m able to enjoy a relatively normal life in
my own way and thoroughly enjoying my
children and grandchildren.
268C
A dream come true!
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luPus uK NEWS & VIEWS SUMMER 2019