I recently asked my sister to wrote a guest post for my blog, to show another side of MG - that of what the family goes through.
Our very first picture together! |
With my sister & brother |
MG does not just affect the diagnosed member, but rather the family unit as a whole.
My sister has been there since the very first day that I was diagnosed (in fact I remember squeezing her hand as we were finally told what was wrong with me), & has not left my side throughout this journey. She has made me laugh throughout & kept my spirits up through the darkest times of my life. She has researched frantically to see if there is anything else that could help; she has done fundraisers overseas for MG & joined a support group in the UK. She has never ever doubted me or put me down, but rather encouraged & loved me throughout this entire journey I have been on.
I could not imagine my life without my sister & I am truly grateful to have her in my life. She is my best friend; my go-to-girl; my own cheerleader & an irreplaceable blessing in my life. She always makes time for me & seems to know when I need a hug/message. Throughout my life she has been such an example & someone I have looked up to as a role model since I can remember.
Thank you Katie for taking the time to write this (and for making me cry just reading through it!). Katie I can't wait to make more memories with you. You are one in a million xxx
P.S. My sister is better than yours!
P.S. My sister is better than yours!
Isn't she just beautiful? |
Living with Myasthenia
Gravis - My life, as a sibling
Diagnosed in 2004, when
Megs was only 15, after quite a few misdiagnoses … initially thinking it was a
form of anorexia as she was struggling to swallow so eating VERY little, then
diagnosed with depression as she started withdrawing and didn’t speak to us
very much and finally we came across Dr Judy Green who instantly diagnosed our
precious baby with Myasthenia Gravis and told us we could have killed her, had
we left it any longer. Poor Mum felt
dreadful as we had been to about 6 doctors already in the past 4 months and the
common diagnosis was “globus hystericus” so the mixed emotions of having a
proper diagnosis was one of relief but the severity of that one comment was
massive …. Little did we know what lay ahead!
At least Megs was admitted
into hospital immediately for further tests and medicated so that we could
start seeing some relief for her. It has
been an absolute roller coaster ride ever since but I cannot be prouder of my
little sproglet. She has faced
everything head on with guts and determination.
From chemotherapy, major surgery, the list goes on … The doctors and
nurses know her by her cheerfulness and something pink as she literally does
brighten up a room.
She used to have plasmapheresis
and asked for day passes to go shopping or when she was at school, to go to be
allowed to matric balls – nothing was going to stand in her way! She was discharged the day before her 21st
birthday after having had heavy doses of chemo, was lying on the couch, feeling
dreadful, but pulled herself together as Jane Linley from East Coast Radio had
organised The Big Favour for her, so we went to the Sharks match in a stretch
limo and then onto Suncoast Casino for a Black and Bling party.
Megs always looks on the
bright side and so facing her operation where they were going to remove her
thymus gland, I stayed over with her the night before as I didn’t want her to
be anxious… we watched America’s Next Top Model and so she decided to model the
surgical underwear they provide, to make light of the situation – and is now
quite proud of her “cleavage implant” she has from where they cut her ribs.
I have never come across
someone who is as positive and makes as little fuss as this little angel. She frequently can’t swallow and has to toss
her head to help the food go down. Speaking is an effort, so has to rest her
head so her body focuses on less muscles, yet she oozes love and
positivity. People don’t understand and
frequently say hurtful things such as “at least you don’t have cancer” or
“you’re so miserable and never join in conversations.” My heart breaks for her
as she needs drugs to survive every single day. Breathing can be an effort. Her
own body is attacking itself. There is no cure. She relies on hope. Hope for
the future that there will be a breakthrough. I want to wrap her in cottonwool
and protect her. I want to preserve her positivity and shower it over
everybody. I want people to understand and give her a break. I want people to
live a day in her shoes. I want people to be patient. I want people to be kind
and loving. I want people to feel free to ask if they don’t understand but
don’t judge – just because she looks beautiful doesn’t mean there isn’t a war
going on inside and she’s struggling. So don’t hurt her emotionally as well –
she’s dealing with enough! She’s been
coping for 13 years and it’s not getting easier. I have the greatest respect
for her – I would be worn out by now, but she’s going strong and trying to
raise awareness and still keeping her chin up!
She is truly remarkable and I have the utmost respect for her – my
little source of inspiration.
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