Changing faces

I wrote about my vitiligo a few months ago and thought it time for an update.  The area around my mouth has spread further but I am no longer at that angry, shocked state that I was in then.  The tears that were shed at the beginning no longer flow - I guess in a small way I have come to accept that this is going to be me for the rest of my days so there really is no point in my being upset for the long term.

1.  There really isn't the time for me to wallow in my own self pity.  The toddler that is Munch sees that I am firing on all cylinders from the moment he wakes right up to the moment his head hits the pillow and there is that peaceful sleepy breathing.

2.  There are plenty more worse off than I am and if they can face each day with a smile and the strength that I admire then so can I.

The last time I truly shed tears was during my visit to a beauty counter to get make up advice.  It didn't matter what the make up artist said, or what Sprout said for that matter - for me it mattered that I could still see where the pigmentation no longer was even with make up on.  It is hard to explain how it has picked holes in my self confidence, it is the little things like turning my face away from people when they look at me or the slight hiding of the bottom half of my face when talking and people are looking directly at me.  Chances are others cannot see - helped by my fringe and geek chic glasses so the attention is drawn away from the bottom half of my face.  But inside I am acutely aware and although more accepting in what is happening am still petrified to what is to come when it comes to reactions of others.

There was a point in this here long journey where I could feel that I was losing hold of myself.  Was it time to admit that I needed help in coping as I was sinking into this pit that was all consuming?  As I sit here and write this I realise that the feelings were the same as those when I first had Munch.  That mourning for a me that was changing and evolving.  Sounds vain but it is the only way I can describe it.

My doctor's appointment ended up with blood tests to check for any problems with my thyroid, diabetes and cortisol.  They all came up clear and so I found myself back at the doctors to discuss my next steps.  I know my doctor very well and work with him in a professional capacity so it was a frank and open discussion about what he could offer and for me to tell him what I would prefer to do next.  There were light therapy treatments that ideally needed 50-100 sessions for some or no improvement.  I do not have that sort of time to commit to treatment in that way and in all honesty I would be heartbroken after the 100 sessions if nothing had happened.  To hang my hopes onto that - I am not sure I am strong enough to do that especially as it is not a life threatening condition.

There are steroid creams but that does not appeal to me.  I currently cover up using normal make up and I wholeheartedly thank the lady from the bottom of my heart for being so kind when she helped me and for not making me feel a total idiot for breaking down in front of her.  So, when it spreads across my face to the point where I can no longer cover it myself I will ask to be referred to the dermatology department at a nearby hospital.  It was empowering to know that I made my decisions as to where I want to go next with this.

There's the applying sunscreen every day to protect my skin that is no hardship, the makeup takes all of 5 minutes if not less these days and to be honest all my fears so far are in my head.  I watch the vitiligo slowly get bigger but its progress is slow so the only person that notices it happening is me.  I keep smiling and going about my days as normal - life goes on.

Charity

For some their chosen charity supports cancer research, for others it's for children, for Sprout and I it is Group B Strep support.

Normally, Group B Strep (GBS) is a harmless bacteria but can be passed to newborns around childbirth.  It can be very serious if the baby then develops GBS infection.  Taken from the GBSS site,

"In newborn babies, there are two types of GBS disease: early and late-onset.  Roughly 75% of GBS disease is early-onset, occurring in the first 6 days of life and usually apparent at birth. Early-onset GBS disease is normally characterised by the rapid development of breathing problems, associated with blood poisoning. Late-onset disease - which usually presents as GBS meningitis - occurs after the baby is 6 days old and, normally, by age 1 month but, rarely, up to age 3 months. After age 3 months, GBS infection in babies is extremely rare.

GBS is a recognised cause of preterm delivery, maternal infections, stillbirths and late miscarriages.
Preterm babies are known to be at particular risk of GBS infection as their immune systems are not as well developed as those of full-term babies.

Overall, without preventative medicine, GBS infections affect an estimated 1 in every 1,000 babies born in the UK. Each year, based on 700,000 babies born annually in the UK, approximately:

• 230,000 babies are born to mothers who carry GBS; 88,000 babies (1 in 8) become colonised with GBS; 700 babies develop GBS infections, usually within 24 hours of birth; and
• 75 babies (11% of infected babies) die.

Of the survivors of GBS meningitis, up to one half suffer long-term mental and/or physical problems, from mild to severe learning disabilities, loss of sight, loss of hearing and lung damage (in around 12% of the survivors, the disabilities may be severe). The great majority of survivors of early-onset disease do so with no long-term damage. "

It was by pure chance that we discovered I was GBS positive.  A urinary tract infection during pregnancy followed by swabs and further investigation was how we found out.  There was a sticker placed on my maternity notes to make sure I was given antibiotics during labour and a leaflet.  No counselling or explanation and as first time parents we were shocked. Throughout pregnancy we were given information to make informed decisions be it relating to scans, tests, pain control etc etc but GBS was not mentioned anywhere.  One leaflet and a sticker.  Really?

We turned to GBSS and got all the answers we needed to understand the whys and wherefores.  They provided us with the all important peace of mind as to what happens next that expectant parents need.  I got the antibiotics during labour and to this day am forever grateful that we understood how important they were.  I cannot imagine how it feels for a new parent to lose their precious baby to GBS infection and learn after the fact that they may have been able to do something about it.  GBSS work tirelessly to educate and support health professionals and families until such time that testing and information is the norm as part of the antenatal care package here in the UK.

You may wonder what my point is.  The beloved Sprout and I get married on 7th June and are using our wedding to raise awareness and donations.  There is no wedding list, no gifts that we want or need; we are lucky enough to have all that we require and a little boy that is healthy, happy and brings us joy that we never dreamed.  We look to raise money to help others in the hope that they too experience the heaven that is our world.  Yes,  I am being cheeky and asking you to donate.

Text ASHM76 £1 to 70070

Should you be kind enough to want to donate more simply change the value.

From the bottom of our hearts, thank you.