Birthdays!

Last week Friday it was my birthday – and I turned a whole 26!!

What a wonderful day it was.  I was so spoilt in every way possible.  My husband woke up singing happy birthday to me, then sent me back to bed (after I had iced my cakes) to bring me tea & a full breakfast, along with my stunning presents.  I arrived at work to a birthday banner, balloons & a card signed by all my colleagues.

With my 2 special friends & work colleagues

I had made 2 cakes the night before (no electricity until 11:30 so I only started baking then!  I had tried to mix the batter by candlelight thinking our electricity would be back on soon, then eventually went to bed.  I was up baking when the light came on until about 1:30am for 2 cakes & a batch of cupcakes to take to my neuro & family) & had them iced & ready just in time for work.  The one was a bit of a flop, but I think they forgave me for that in light of the fact that Eskom was not my cooperating.

I got so spoilt by everyone here – socks (you will understand me laughing at this if you know me…  Socks in my opinion are something you give to someone when you don’t have any other ideas or when you don’t really know them.  My boss knew how I felt about them so got me some as a joke!  I wore them around the office.); books of faith; a herb planter with herbs; a pen with my name on it & so many hugs.  We only work half days on Friday, & I rushed off from work to quickly get everything in my car & head off to the doctor.

My beautiful herb planter - even came with pink ribbon!

Always a wonderful thing to get good news on your birthday!  She is so happy with my progress that she has stopped my cortisone (YAY!  No more moon face or chubby cheeks!!) & only wants to see me in about 6 months – or when I am pregnant.  We are looking into alternatives to CellCept now as well as the side effects for my unborn child are just awful.  We are praying so hard, & have so many people praying for our miracle child to come into our lives.  I believe it will happen, but better to go off the CellCept (read: poison) sooner rather than later.  I have been off it for 4 days now & am feeling fine – don’t feel like I am slipping back or being “thspecial” at all.  Very excited!

Anyway, we spent the night with Mum as she lives closer to my neuro & had lovely Thai curries for dinner.  Where we live we don’t have this luxury, or at least not that I know of so this is a huge treat.  Poor husband got the “Jungle Curry” & was sweating after about 5 mouthfuls.  Thank goodness Mum & I got a milder one so I could actually enjoy it.  I got terribly spoilt by my mum with clothes, books, & all sorts of lovely things; & my sister blessed me with a Kindle.  Yippee!!  No more book falling on my face at night time or when my arms have given up!  And I can take it with me wherever I go – because yes, I am that much of a bookworm/nerd.

My Kindle!

The following day started with going to see my godson to give him his present (his birthday is the day after mine! ); then popping in to see my brother; before heading home where I had planned a tea party with my friends.  I wanted something different to the usual & during the day, as I usually start going down from about 5pm.  My nearest & dearest came to celebrate with me & the table was groaning under all the delicious food.  It was so lovely spending time with everyone, but my late night on Thursday was catching up with me by the time everyone started arriving.  I was battling to talk & was feeling rather overwhelmed by everything.  Luckily people do understand & I do hope everyone enjoyed their day as much as me.  I got spoilt rotten again with everyone bringing me such lovely things – clearly they know me & my love for girlie things, relaxation, warmth & chocolates.  It was just a pity I couldn’t enjoy the day more – I was battling to swallow & so didn’t get to enjoy all the yummy foods available, & with my funny talking I didn’t get to catch up with all my friends & family there.  I really do appreciate everyone coming & making the effort - & for spoiling me so much!  Thank you, thank you, thank you!

Me with my gorgeous husband

When I got home that night, I passed out on the couch in about half an hour - & woke up there after 11 while husband was still playing Call of Duty with his “clan”.  I went straight to bed & woke up feeling a lot better on Sunday morning.  I went with Mum to go visit my gran who lives in frail care.  We spent the morning with her catching up & laughing lots.  Family is so important to me & I honestly don’t know what I would do without them & all their love.

My birthday continued on Monday when my best friend came to visit & brought the most amazing pizzas ever (if you are ever in Pietermaritzburg you need to try Pizzology – really) & we spent the evening catching up & just having some much needed girl time together.  She means the world to me & has been there for me through everything.  We don’t get to see each other as often as I would like, but I know she will always be there for me no matter what.

Yum yum!

 The week continued in an amazing way, with dinner with our Connect Group (from the church) ladies on Tuesday; puppy classes on Wednesday (and my little Lola was so good & is learning so much); a completely relaxed evening of Grey’s Anatomy on Thursday; & on Friday another surprise visit from Miranda along with some beautiful gifts.

The only grey cloud was news that I received yesterday from my gynae…  All tests for husband & myself came back perfect – except for one.  I had hormone tests, & the one for Anti-Mullerian Hormone came back very poor which shows that unfortunately I don’t have many eggs left.  The gynae also wants me to have my op as soon as possible to remove the cysts & check my tubes.  They won’t do keyhole surgery because of all my previous issues & the scar tissue that has formed.  She is getting hold of a surgeon & an anaesthetist that have dealt with someone with MG & will get back to me by early next week to give me the date of my next op.

I am terrified.

But I know that God has this under control, & that He doesn’t give me anything that I cannot cope with.  I am trusting that this op will be the end of all my issues, & that by my next birthday I will be celebrating along with my sproglet!

Thank you to everyone for their messages, love, spoilings & treats for my birthday – and always.

Going Backwards

I am sorry I have been quiet for a while...

As you read in my last post, I ended up in hospital last week Friday on a treatment called Solumedrol.  This is a very high dose of cortisone & is meant to make my illness settle further into remission, or at least make me get some of my energy back & feel slightly more 'normal'.

On Saturday I still wasn't feeling fantastic.  I thought perhaps I was going backwards, but didn't want to admit that to anyone - least of all myself.  I slept majority of the day but this didn't seem to make a huge difference.  My doctor wasn't on duty over the weekend, but luckily the doctor who was knows me & my history, & could see that I wasn't doing well.

It was my mum's birthday on Sunday.  Again I stole all the attention!  (By the way, this is a joke...  I didn't really do it on purpose, & we joke around that I do this for attention - easier to joke & laugh so please laugh with me when I say this.)  Mum came to see me at about lunch time, & somehow with her amazing mum telepathic knowledge, she arrived with some soft foods for me & a big pink cuddly bunny rabbit.

My talking was shocking.  I was really battling to get my words out - if you have ever tried to talk after having gone to the dentist, or with a really large grape in your mouth, this is what it feels like for me.  Well, it is the easiest way to try & describe it to others.  It is difficult for people to understand me, but it is also very difficult to get my words out.  And then I start getting agitated, which in turn makes my talking even worse.  It's a vicious circle of "thspecialness".

And then there was my swallowing...  My talking is always the first thing to go down & that's how I know when I am having a bad day or going backwards.  But when it gets to my swallowing then I  know it is slightly more serious.  I battled to chew & swallow my bacon I had ordered for breakfast, & ended up choking slightly on this.  So that quickly went to one side & I managed to finish a small container of yoghurt before my muscles were exhausted & it was time for a nap.  When mum arrived at lunch time (just as my drip was finishing), I had just taken my medicine & I usually have to wait at least an hour before eating anything as the medicine helps my muscles remember what they should be doing.  So we sat trying to talk & celebrate her birthday until I could try my lunch.  I had ordered a pie with mash & veggies - sounds pretty easy & soft to swallow right?  Wrong.  Mum cut my food up for me & spread the pie sauce in with the mash, but nothing was going down.  It kept getting stuck so I was constantly clearing my throat & coughing to try get it down.  Thank goodness for the baby food mum had brought!  It was just the right consistency & I managed to finish this just before the rest of my family arrived for mum's birthday lunch.

By the way I just have to say here - how amazing is my family that they all came to hospital to make sure I was included in mum's birthday celebrations?  Truly blessed.

My facial muscles weren't working too well either - I looked like I was snarling when I was really just trying to smile.  I couldn't frown, & trying to lift my eyebrows made it look as though I was trying to make my eyes pop out of my head.  It is the weirdest sensation to try & explain to someone.  You think you know what your face is doing, but your muscles are just lazy.  And when you see yourself pulling a face, you realise just how silly you look & that oftentimes you look nothing like what you were imagining.  Surprised, cross, confused, or upset; they all just look like you are devoid of emotion.  And as you all know - I am one big emotional ball!  I wear my heart on my sleeve & often cry for the slightest thing.  So not being able to show other people how I am feeling, or even properly express it, is one of the worst things for me.

We had a lovely lunch with my mum, husband, brother, sister-in-law, nephew & sister (via FaceTime - thank you technology!) but I was finished.  Done.  I didn't even have the energy to sit up straight & keep up a positive front.  I was exhausted, emotional & just wanted to go home to my own bed & away from the hospital.  It was fantastic being able to spend that time with my family & it certainly helped lift my spirits.  My family are amazing.  The biggest blessing ever.  I don't know what I would do without them.

My family at our wedding.

The doctor came for my check up & decided that we should stop the drip.  Due to the fact that it is a high cortisone dose, this can bring on a relapse & this is where she felt I was headed.  In my mind I was scared of this too, but never want to admit that.  I hadn't felt so shocking for about 7 years.

My family left for the day, & husband walked me back to my bed where he helped me in & tried to get me to swallow some water so I wouldn't get dehydrated.  This can happen as I don't like to swallow anything extra when I am battling.  I got a wonderful surprise when my friend arrived to check up on me as well.  We chatted amongst ourselves for a while & they really helped lift my spirits again.  Thank goodness for friends, family, & my amazing support system.  Without them I think I would have fallen apart a very long time ago.  I am so lucky to have them in my life to lift me up when times get tough, they carry me through the terrifying times & support me through all this nonsense that has been thrown my way.  I know I am not always the easiest person to live with or to understand at the best of times, but there are some real gems in my life who have stuck by me through thick & thin, & have still loved me.

Warren & Miranda

I fell asleep that evening almost as soon as everyone had left & woke in time for dinner - which again I couldn't swallow.  I ate the gravy of the stew & some mashed butternut.  It wasn't a lot, but I needed to keep my strength up somehow & need some nutrition!

I slept straight through the night & the next day my drip was taken out.  They increased all my medications - I have gone from 4 tablets a day to 20.  This is still not too bad as I have been on many more than this, & I would rather rattle when I walk (from the meds) than go back to where I was with regard to my MG.  Monday was a constant improvement, & by Tuesday morning I felt almost back to my old self.  I was still a bit weak but that is probably from being a lazy bum staying in bed & not eating properly.  My doctor discharged me & I am now at home healing & getting stronger.  I am only allowed back to work next week Monday as I need to build up my strength, take things easy, sleep lots & allow the medicine to kick in properly.

I can honestly say that I am feeling one hundred times better than this weekend!  I was petrified & thought I was heading for crisis, but thanks to my fantastic doctor, the care at the hospital & all the prayers, I know that things will only improve & soon I shall be back to normal.

Our only concern now is having a baby.  The medication they have started me on can cause major birth defects & miscarriages.  Thus we cannot think about having a baby until I am off this medicine.  This has really broken my heart, as all I have ever dreamt of is being a mum.  Warren & I have spoken about having four kids & growing our family.  I feel like this is all my fault as if I wasn't sick I wouldn't have to be on this medicine, & then we could start our family immediately.  I want a Warren Jr running around the house like a hooligan, & a Megan Jr to play dolls with & plait her hair.  I want happy healthy children.  I know there are other alternatives & we are hopeful that I will come off this medicine & then can start trying for kids again.  But right now it is consuming my mind.  It is all I can think about.  I see all my friends falling pregnant & having babies, & I want that to be us!  I am ashamed to say that often the little green monster in me comes out - although I am very happy for them, please don't get me wrong.  All babies are a blessing & I am hoping that our day will come.

For now, I am sitting; waiting; healing; believing.  Every day gets a little easier & better with regard to my health & the magnitude of the consequences thereof.  And I have my cuddly pink bunny rabbit from my mum - because we all know that pink makes you feel better & happier!