Reflections

2017 was a difficult  horrid trying year for me, & for many others that I have spoken to!  I don't know what it was about it, but it just was not pleasant & I am so glad to have it behind me...

But, this post is not going to be about all the bad times, or the fact that I was hospitalised more in 2017 than I probably have been in my entire life put together (& that's a lot for me!); instead I am going to write about the lessons I have learned.

Happy New Year from Warren & myself!

1.  Family are there for you no matter what - even if they aren't able to be there physically.  
I think I have given my poor family a few grey hairs over the past year, but they still love me.  They message me; visit when they can; FaceTime me at least once a day (ahem - this would be my sister who was living in England & wanted to check up on how I REALLY was!)  They know that we are not exaggerating the situation, in fact we are most probably underplaying just how scary & difficult things are.  Although we are living further away from most of our family than we ever have before, our relationships are stronger than ever & I really feel blessed to have them all in my life - even my bossy aunties!!!!
They love me for me, warts & all.

Mummy & me

With the in-laws at Christmas having some fun

Me & my special mother-in-law

Owen, my precious nephew, & me

Millie, my cousin's daughter & my goddaughter had such special bonding time this year when I went to Cape Town for a doctor's appointment.  It is scary how much she reminds me of a younger me!

My special family - only missing a few here!

My sister; Dawie-darling & me on our trip around London!

2.  Friendships can be found in the most unexpected of places!
I have made such amazing friends here - the type of friendships that you read about in books or see in movies.  Friends that I could phone at 2am & they would rush over to be with me immediately.  Friends that brought me home cooked meals when I was going through chemo so I wouldn't have to cook.  Friends who would send me an encouraging message when I was having a tough day - without even knowing how much I needed it.  Friends who drove out of their way on Christmas Day just so they could come give me a squeeze & we could have a quick catch up.  Friends who get my crazy & love me for it.  Friends who drop everything to take me to/collect me from yet another hospital stay.  Friends who didn't mind me going to lie down on their bed to have a snooze while we were there for a braai.  Friends who added me into their inner circle as if there was always that spot just waiting for me.  Friends who understand that even if I don't always reply to messages, they are always in my heart.
I have made friends in hospital; at an amazing international conference that I was lucky enough to attend; through my support groups; through my job but mostly just from people who were there for me no matter what!  This is a shout out to those friends who make my world a better place - I have never known such support & love; & it certainly makes everything a whole lot easier.

With our JHB "family"

A friendship that has stood the test of time.

With my boss/mentor/friend

FaceTime with Farlz - one of my absolute FAVOURITE people from school days

My beautiful friend Kim (from Canada) who I met in Spain.

Me & Helen on our bonding trip to Spain.  I couldn't imagine my life without her & her cartwheels!

Navasha & I met on a FB group that we were both in & we just clicked.  This girl has been there for me through everything & always finds the time to pop in with a smoothie & a smile.  I am so grateful for her!

Candice is a fellow snowflake & someone very special to me

3.  Opportunities fall into your lap when you least expect it.
I think so often we take life for granted.  Being able to rush around with work & play; run a 5km fun run; attend events; being able to actually swallow & enjoy a meal etc etc.
This past year has taught me my limits, but it has also taught me that I need to appreciate every single moment of every day. 
Read that book; tell people you love them; work harder & with more heart; be kind; & live every day as if it is your last.
This year I got to go on my first ever big overseas trip; I had some amazing interviews to create awareness about Myasthenia Gravis & Rare Diseases as a whole (some when my talking wasn't great; but this helps to show a side of the disease that I often don't want to); & I got to meet & spend time with our beautiful Mrs South Africa - who I can now consider to be a friend.
None of this would have happened if it wasn't for me having Myasthenia Gravis.

Nicole Capper featured me on her "I See You" FB page; we had a whole episode of Bophelong devoted to Myasthenia Gravis & Rare Diseases; I was interviewed by my favourite radio presenter, Jane Linley-Thomas from East Coast Radio; one of my favourite blogs that reminds us of the good in life, Good Things Guy, did a feature on me; my special friend from "I Have A Name" did a feature on creating awareness for invisible illnesses; ANN& Shape Your Life did a segment on living with a Rare Disease; I was featured on The Mighty - with 2 different posts! - here & here; I was one of the patients featured on Rare Diseases SA platform for MG Awareness Month; my mum-duck wrote an amazing article from her heart about being the mother of a chronically ill child; & News24 helped create awareness through this article.
Shew - writing those all down really made me realise how much awareness was created this year!  It blows me away.  Next stop Ellen - hey, a girl can dream right??

With Zahidah (another MG warrior), Nicole Capper (Mrs South Africa) & Jonathan (Top Billing presenter) from our Top Billing experience.

"Wonder" movie premier

Tourist selfie in Spain

With Nicole Capper for her "I See You" campaign on Facebook.

Me, Nico & Kelly at our first ever Patient Huddle

Some special friends I made earlier in the year, & we were all interviewed by Anele!

4. Mental Health is just as important as physical health
For years I was too ashamed to admit that I wasn't coping with my diagnosis & the limits it was placing on my life.  This year I finally owned up to it & was put onto antidepressants.  I was so ashamed; until I realised just how much they helped!  I could cope with life.  I wasn't crying every day.  I wasn't lashing out at people.  I was finally getting back to my old self, my happy self.
Take care of all the different parts of you - emotional, physical, mental & spiritual.  It really does make a difference.

5.  Doctors & nurses are human too
I have been so lucky to have found the doctors that I have here in JHB & Cape Town (my MG specialist).  They truly care about me; give me hugs at the end of my appointments & only want the absolute best for me.  They have cried with me when I have relapsed & done a happy dance with me when things improve.  The nurses have become my friends & I often pop in just to go say hello to them - I am always welcomed with hugs & "when are you coming back?".  They have held my hands; brought me tissues; welcomed me "home" & truly cared.
We often forget that they are people too that have their own lives; their own trials; their own battles...  Yet they put this all aside to care for others & provide support.  They see the real side of patients, yet they still love us & do all they can to make our lives that much easier.
My doctors have never given up on me.  They have fought for me & kept trying new treatments to improve my life.  I wouldn't be here today if it wasn't for them.

6.  Find a job that you love
I was terrified leaving my stable job with a stable income & doing something that I knew & understaood when we moved from KZN.  I wasn't able to find a job here in JHB due to my constant hospitalizations; & this is where Kelly stepped in.  She offered me a part-time job that I could do when I felt up to it so I could still earn a form of income & not put undue pressure on my husband.
Over time, I have realised that this is my passion!  I love what I do.  I love interacting with patients & helping them as best I can.  I love the ladies that I work with & the fun that we have when we are together.  I have never been happier doing any type of job & I look forward to turning on my laptop every day.  No 2 days are the same & I am constantly learning.  I have become more compassionate; more understanding & also finally found my voice in society.

Kelly, Shevaun & myself - some of the team

So, 2017, you have taught me a lot of lessons.  But, you have shown me that there is always sunshine after a storm.  I have learnt to see the positive in every day.  I have learnt to #ChooseKind. 
But most of all, I have learnt to never give up.  Even when it feels like it is the end of the road; we are still on a journey.  Enjoy the views.  Sit back, relax & look forward to what is still to come!

Time

I haven't written a blog in what seems like forever...  I honestly don't know where time has gone.  Life seems to be so hectic at the moment that I have battled to find the time to sit down & write - without wanting to just fall asleep!

Life is good.  It is hectic but I am strong.  MG is not giving me too many issues, with only my talking letting me down occasionally; and this is mainly only after a long day at work.  My hands are working well, & my fingers don't want to constantly drop things as they did previously.  I haven't choked on any food in some time now (touch wood) & I have even managed to wear heels out in public without my legs collapsing beneath me.  So all in all life is pretty darn amazing!

Work has been very busy, which I enjoy.  It makes the days go by quickly & keeps my brain on top of its game, as well as thinking of other things rather than my health.  We have plans nearly every weekend, with baby showers;  birthday parties & time with family.  I cannot believe it is already August.  Where has this year gone??

I have been continuing with my appointments with Dr Colin (the fertility specialist) & so far things seem to be working.  This last month I finally had a healthy, good-sized egg & I am still taking all the tablets that will hopefully help us to have that baby we have so been hoping for.  My progesterone levels are also higher (i.e. I am VERY emotional!).  

Every month is difficult.  We wait & wait-then good old Penny decides to drop in for another visit.  Silly woman.  I am trying very hard to sound nonchalant about this, but inside it breaks me.  I feel like a failure as a wife.  It is our greatest desire to have a baby.  People keep telling me to forget about it & then it will happen.  Believe me, if I could I would.  But how can I when I have been told I have until the end of the year to fall pregnant before more drastic steps have to be taken?  How can I when every month is a waiting game?  How can I when it seems like every second person I talk to is pregnant?  How can I when it lies heavy on my heart?  How can I when people are always asking us when we are going to have that baby, or want to offer us advice on what works best to fall pregnant?  I know they are probably just trying to help, but it cuts right into my soul every time.  We have been praying over this & I have handed it over to God.  It is in his hands now, & I know that it will happen - in His time.  Mark 11:24 says this, "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."

The ribbons I made for friends with a tiny snowflake in the centre!

I have so many ideas for different blog subjects that I want to write on, but to find the time currently & get my head around everything is proving to be very tricky.  I will get there & hopefully will get back on track with putting all my thoughts into action!

I just want to take a moment to thank everyone who helped me to create awareness for Myasthenia Gravis during the month of June, the international awareness month for MG.  Thank you to everyone who wore my ribbons, bought my car stickers & taught people something about MG.  I have had such an amazing response & really just want to thank everyone for standing beside me & supporting me in every way possible.  You guys are legends!  I am truly blessed to have an amazing support team & you are the reason I get up every morning, smile & get through the day.  Thank you for your support, for loving me (warts & all) but most of all for helping me to see there is a light at the end of the tunnel.

The car decal I have on my car to try create awareness

Car decal friends & family have bought to put on their cars

I am grateful for the tough times I have been through.  These have helped me to truly appreciate the good times; to live every day as if it is my last; and to be the person that I am today.  I have learnt to trust God completely.  He sees the bigger picture & I know He has an amazing plan for my life!  If I can help just one other person going through a similar issue, then I will be happy.  I am the person I am today because of my MG & what it has taught me.  It has helped me to mature; be more understanding & patient; love others for their differences/individuality; make the most of every opportunity; & also not to take my health for granted.

Our lives were given to us as a gift.  We should treasure every day, & treasure every person that crosses our path.  Maybe we can learn something from them; or maybe we were meant to meet them to cheer them up & help them see the good in laugh. 

So remember, be friendly.  Smile at the grocery packer & cashier.  Take the time to talk to the car guard.  Make friends with your colleagues.  Play with kids.  Spend time with your granny.  Support those less fortunate than yourselves.  You don't know what other people are going through & how much your simple smile or word could mean to them.  And hopefully one day if you are having a bad day, you will come across a stranger who will remind you how special you are & will give you a smile to brighten up your day! 

Operation Time

Last week Thursday I was admitted into hospital to have some ovarian cysts removed, as well as to have my tubes checked out & ensure everything is in tip top order.

The day before I had to stay at home as I had to take 3 sachets of Klean Prep.  For those of you that have never taken this, thank your lucky stars!  It is grim.  There is no other way to put it.  You mix each sachet with 1 litre of water & have to drink that within an hour - sounds easy right?  Wrong!  The first glass isn't too bad - in fact I found myself saying, "This will be easy!  I've got this!".  That was until I had to start on my next glass, & my stomach was already full from the previous glass.  I finished the one litre & it started working straight away.  It empties your stomach.  Of everything.  The toilet was my best friend!  In fact I left a book next to the loo so I didn't have to really move.  I mixed up the next sachet with water & as I held the glass towards my mouth, I could feel goosebumps starting.  The smell, along with what I knew was coming, made me feel ill.  I managed to finish this litre with great effort, & even though I thought there couldn't possibly be anything left inside me, there was still stuff coming out!  I hadn't eaten since that morning so didn't have anything to add to what had to come out.  It was gross.  Thank goodness I was home alone that day!

We arrived at the hospital at 6am to check me in & husband waited with me while the anesthetist came to check me over & chat about what drugs he would use - as someone with Myasthenia Gravis, we should not go under anesthetic or have an muscle relaxants as our muscles are relaxed enough!  Luckily he told me had worked with quite a few Myasthenics so was confident & had this under control - this made me feel a lot better & a lot calmer.  The surgeon also came to introduce himself & let me know what he would be doing.  He said judging by the size of the cysts & all the drama that happened last time, they probably would have to do a big incision.  He would start with keyhole surgery & see if he could manage it that way, but I should expect a proper cut when I woke up.  I appreciated his honesty.  At least I knew what to expect!

I had asked friends & family to wear teal in order to raise awareness for Myasthenia Gravis on this day & also to show support for all of us snowflakes fighting an ongoing battle.  I am so blessed with all the support & love I received.  Here are some of the people who sent me pics showing their support:

I really felt the love that day & appreciate it more than you could have realised.  It really made me feel safe, secure, & honoured to have you in my life.

At the hospital the nurse came in with my sexy (teal!!) hospital gown, along with one-size-fits-all disposable panties that I had to go put on.  The look on my husband's face was priceless!  I just got the giggles - especially when I opened up the panties to all their glory...  They could have fitted husband & myself in them quite comfortably!  Anyway I got dressed & sat waiting on the bed for them to come whisk me away.

Waiting to be taken away!

I think the waiting to be taken to theatre is almost worse than the actual operation!  Luckily my wonderful husband was there with me, holding my hand & calming me down.  He kept me smiling & helped the time pass.  Eventually 8am came & they gave me an injection for pain, to calm me down & prepare me for the op.  It knocked me out!  (I am not a great pill popper so even Panado makes me sleepy!)

Ready for action...

They started pushing my bed to the theatre & husband came along with me.  He gave me my final kiss goodbye at the entrance to surgery & then it was go time.  Into the theatre we went, & straight into the operating room where the Gynae, Specialist Surgeon, Anesthetist & nurses were waiting for me.  I climbed across to the operating table & they covered me with blankets.  They put my drip in & gave me something to make me feel sleepy "in a few minutes".  Well, they had hardly put the mask over my face & I was already off in la-la-land.  I am not afraid of going under - in fact it is probably the best sleep you can ever have.  Nobody should fear that feeling - the doctors are in control & you are blissfully unaware of what is going on.  Then you wake up like Sleeping Beauty - all fixed & less the weight of whatever was removed!  Amazing!

I woke up some time later (4 & a half hours to be exact) in Recovery - shaking like mad.  I was FREEZING.  They kept putting more & more layers of blankets over me & eventually put a hot air blower under the blankets to get me nice & warm.  I had to wear the oxygen mask for a further 2 hours as an added precaution.  As soon as they wheeled me out, husband was there.  He jumped up, gave me a kiss & walked me back to my room.  I was still very dozy & apparently told him the same thing over & over again.  He gave me the best news though - they only had to do 4 little incisions.  I was so relived & thankful that I wanted to cry.

I was very sleepy for the rest of the day & only woke up to take my tablets, go do a wee (they were threatening me with a catheter so I had to stop that before it went any further), try eat some food & when my visitors came that evening.  I felt amazing.  I had a slight bit of pain, but nothing too hectic & I could move around without experiencing any nonsense.  It was such a relief to be rid of that dull ache that was a result of my cysts, & I was allowed home early on Friday.

I still can't believe it.  That was my shortest hospital visit ever.  The doctors all said they couldn't believe how well the op went & how quickly I bounced back.  The left hand cyst was 10cm long, whilst the one on my right was about 6cm.  Not your average cyst thats for sure!  No wonder I was in such pain.  They also said my tubes were quite badly damaged & are very thick.  I may have trouble falling pregnant, but right now is probably the most fertile I will be as everything is cleaned out & ready to roll.  I also believe in miracles.  This will happen for us!

I went to see a very good friend of ours who is a fertility specialist & homeopath & he has changed my diet (no wheat, no sugar, no alcohol, no coffee) as well as giving me supplements to get me on my way, & hopefully help with my MG simultaneously.  Through all of this drama my MG has been very well behaved - in fact I would say it even deserves a gold star.  It hasn't reared its ugly head & has let me recover from the op completely without trying to take over & control my life again.

So for now I am still trying to raise awareness for MG.  June is the Myasthenia Gravis Awareness month, so I have made little ribbons to give to my friends & family & am posting something about MG on a daily basis on my Facebook, Twitter & Instagram accounts.  The more people who know about MG the better.  Hopefully this will lead to more compassion, love, understanding & patience shown towards us snowflakes.

I am also hoping to create awareness through local media - newspapers, TV, radio, magazines & the sort.  It is not easy & people are not always interested but I am going to continue trying!  There is a walk in our little town on the 22 June & I am hoping to have shirts made to raise awareness for MG, as well as perhaps getting some branded helium balloons to catch people's attention.  I will not be running, but I will try complete 10km.  I will beat my MG & I will stay a positive snowflake!

So please, if I can ask you a favour, help me to raise awareness for Myasthenia Gravis & all the snowflakes out there.  Wear teal, make a ribbon & research what MG is.  Talk to people about it.  Show an interest.  Stay positive.  But most of all, let all the snowflakes around you know that you are there for them & you love them.