Things to take your Chronically Ill friend in hospital

When you first get sick, the amount of cards, flowers & visits is almost such that you can't keep up with everything.  There isn't a day that someone doesn't come to visit you & you no longer have room to display all your gifts.

However, as time goes on & your hospital visits become the "norm", things start to die off.  When you say that you are being admitted again, people respond with "how long this time?"  Your visitors become the nurses looking after you, & those closest to you know exactly what you pack in your usual hospital bag.

Recently I have had quite a few of my fellow Rare Warriors spending some time in hospital & feeling rather overwhelmed with the whole situation.  I asked on my Facebook page what other friends would love to receive, & what ideas they had.  When I posted this, I had such a great response & realised that many friends had no idea what to bring with them or if I still wanted visitors.  With all this being said, lets jump straight into the ideas that were thrown around:

Your Time
Please don't forget about us!  Please come visit us in hospital, send us a message or give us a quick call.  Knowing that people still care about us & are supporting us through our journey means more than anything.

A Cuddly Toy/Pillow
Hospital life is tough.  There are moments that the tears flow freely or when you are completely overwhelmed at the entire situation.  Everyone's lives continue around you & sometimes all you need is a cuddle to help you through that time.  A Rare Bear is super special too as these are handmade & unique - just as rare as us!  It also helps to have a little bit of home with you whilst you are stuck in hospital.

My beautiful friend Ash - with Rarity from My Little Pony

A Soft, Beautiful Blanket

Hospital is cold, & I know that my treatment causes my body temperature to drop even further.  I have sometimes had up to 7 blankets over me just to try stop me shivering!  They are stark, white places & having something bright & cheerful can really change the whole mood of the place - my doctor always comments that she knows where to find me as she just has to look for the pink/unicorn things.

A Hot Water Bottle/Wheatie Bag

Muscle spasms & pain is common place with being bed bound; having permanent lines inserted; or even just the stress of your 'normality' being flipped upside down.  These help to ease this pain; relax your muscles; & provide some comfort.  I don't go anywhere without mine & have one at home, one at work, & one that I take with me to hospital.  They really help with headaches, period pains & tension.

Hand Sanitzer & Hand Cream

Often Rare Warriors have compromised immune systems & the hospital hand sanitizer is so strong & reminds me of being in hospital, so I love those dinky little gels/sprays that I can carry with me at all times to prevent the spread of germs & keep me feeling fresh.  These are often quite drying though, so hand cream goes hand-in-hand with this (excuse the pun!) & I am constantly applying lotion to try keep my skin feeling soft & nourished.

Lip Balm

I don't know what it is about being in hospital, but my lips are forever dry!  And chatting to fellow hospital-goers they said the same thing.  I am not sure if it is the constant air-conditioning; the change in atmosphere; or the different treatments, but my lips pay the price.  I take a massive jar of vaseline with me, & I know when I was on a ventilator this is all I wanted.

 

Colouring In Goodies

Being stuck in bed for up to 24 hours a day means you can get bored; your hands don't know what to do; & there is only so much TV that you can watch!  A friend makes the most stunning colouring in books that you can purchase online & download then print yourself.  I know that I will be taking mine in with me for my next admission.  You can buy these from Etsy or contact her directly.

Books/Magazines

I will be the first to admin that I am a complete & utter bookworm!  I have known to stay up until early hours of the morning to simply finish a book.  I love everything from Harry Potter to Jodi Picoult to murder mystery.  Recently I was sent some books by Christine Bernard & finished all of them in a week as I simply couldn't put them down.  She has just released a new one so give it a try :)  Plus she is a South African author & I always prefer to support local & celebrate this talent that we have.

Travel Sized Toiletries

With many pairs of pajamas, medication, stuff from home, work goodies, cellphone chargers & adapters; my bag literally split at the zip during my last admission.  I had to take all my toiletries in a different bag just so they didn't leak all over, or spill out of my bag.  Then when I popped into the local shopping centre I was reminded of the smaller toiletries such as body wash, body cream & so on.  It would make such a difference not just in space, but to also make us feel cleaner & prettier - & to take away the smell of hospital that seems to seep into every pore.

Dry Shampoo

Oftentimes you have a drip inserted, or some kind of appendage that makes a normal shower difficult, & the very idea of washing your hair is just beyond what you can cope with.  My admissions are only 5 days at a time, but I know there are many people who are in for much longer.  Hair goes greasy quickly when it is constantly against your pillow, & a little container of dry shampoo is an absolute lifesaver in making you look & feel better!  If you can't bring one of these in, perhaps offer to help wash our hair in the basin.  It will mean more than what you could ever imagine.  It's amazing the difference that clean hair can make.

Socks/Slippers

Going back to how cold a hospital can be, socks are an absolute necessity.  The best socks that my mum ever got for me had little grips on the bottom so I wouldn't slip when I got up to go to the bathroom.  If my feet are warm then my body seems to maintain heat a lot better, which makes me a lot more comfortable.

Data

I don't know about you, but I FLY through mobile data whilst in hospital.  Not all hospitals have WiFi & thus any time spent online, on Facebook or even whatsapp causes my data to run out a lot quicker than it does when I am just at home.  It is not something people think of, but this helps us keep an eye on what is happening outside of the hospital walls & also keep our family & friends up to date with how things are going.

Eyemask

Lights in a hospital are on 24 hours a day & this can make sleeping difficult.  Something that can be used to cover your eyes makes such a difference & can mean a proper nights rest - believe me we need this!  Sleep also helps your body to heal quicker so hopefully we can go home quicker.  There are some adorable masks at Typo & all sorts of pharmacies that would truly brighten our time away.

Facial Mist & Body Spray

The smell of hospital is one that is very noticeable & seems to hang around in our pores, leaving a lingering smell & reminding us that we are stuck inside & not in our own space.  

A facial mist is so very refreshing (my favourite is this one from Pink Cosmetics) & helps to cool down your skin should you have any reactions to the treatment or medication, as well as moisturising.  

The body spray keeps you smelling fresh & clean - it's great to just spray a little after a long snooze, or just before visitors pop in.

These are just a few ideas that I have collected from chatting to friends & family.  There are so many other ideas, & just anything that will get us to smile (including you!) is so so appreciated.

Thank you for loving all of us throughout our journey x

Acceptance

My last blog was a very long time ago...  There has been so much happening & we have been trying to process it all before we let everyone in on it.  My emotions have been all over the place, & I think (thanks to a friend for pointing this out!) that I hadn't fully accepted what has happened.

It has been an extremely busy year so let me quickly try summarize what has been going on - otherwise you could be here all day reading my story & I think that will drive you mad!

I am still going into hospital to plasmapheresis - we have realised that this is what is keeping me going & unfortunately my health has declined to the point where I spend only 2 weeks at home before needing to be admitted for 4-5 days of plex.  The effects of the plasmapheresis only last for 4 days before I start declining again, & then I battle for as long as possible before needing to be admitted.  I am now making use of a walking stick to help me keep my balance & take some of the unnecessary stress off my body when I go out in public.  I am exhausted constantly - from fighting my body, from putting on a happy face & from the emotional turmoil that I have been through (more on that later).  I have been on 4 different immune suppressant drugs over the past year & a bit to try control my MG, but unfortunately these are not working.  Methotrexate, CellCept, Azathioprine & Cyclosporin are just not making a difference.  I am on 4 different other medicines on top of these as well - each with their own array of side effects.
Before I used to come in for plasma once a year (as a maintenance treatment - think of it as changing my batteries to keep me running for another year), & now I am coming in after a fortnight (my cup has a hole in it, causing my health to leak out - the plasma is replenishing the liquid in the cup, but we are in a constant battle to try fill it up & cannot find the "leak" or how to clog it up).

Feeling grim & unable to smile.

 My darling precious granny passed away earlier this year,  It was the absolute worst thing I experienced.  Gogo was so much more than just my granny, & being away from my family at this time was extremely difficult.  She passed away in her sleep, but was battling for some time with her body slowing down & her memory falling away.  I miss her every single day, & often find myself picking up my phone to give her a ring & let her know what has been happening.  She truly "got" me & could always make me smile when I was having a down day.  I am so lucky to have had her as such a big part of my life for so long, but it doesn't make things any easier. The stress of losing her definitely affected my health, & I was admitted for emergency treatment just after her passing to try lift me out again.

With Gogo at our wedding

Together with the cousins at Gogo's memorial - bright colours for our precious granny.

Husband & I have been trying to still live our lives & suck the marrow out of it whenever possible.  This isn't always easy - especially with my health as it is.  We cannot make plans for more than a week away, as we don't know what will happen with my health or when I will relapse again.  We cannot travel too far from the hospital & need to be constantly aware of my abilities.  One braai out with friends means almost 16 hours of sleep to try recover - and paying for it for the next week.  We have amazing friends that truly understand this & take such good care of us - having husband over when I am in hospital & constantly checking up on me to make sure I am behaving!!

I was blessed to go to Barcelona, Spain for the EURORDIS Summer School on Patient Advocacy & Clinical Trials with my job for Rare Diseases SA.  What an amazing opportunity!  I met the most amazing people & came back with so much knowledge & excitement for the future.  We also managed to squeeze in some sightseeing as this was my first trip to Europe, & I really felt truly blessed.  The doctors did 4 rounds of plasma before I left so I was strong for my trip & could properly enjoy it without missing out on too much.  I did go for naps every lunchtime & pressed snooze on my alarm more often than I should have, but otherwise it was even more I could dream of.  I did choke on my food occasionally; missed out on meals as I couldn't swallow; & kept quiet more than I wanted to as talking was too much of an effort - but my heart was happy & I was determined to not let my health make me miss out on this experience of a lifetime.

With Helen from Genetic Alliance

Being a proper tourist

After our time in Spain, I stopped off to see my sister in England.  Katie is my best friend & biggest supporter - being away from her is so difficult & we talk almost every day on FaceTime.  Because I was so close to her, I couldn't miss out on an opportunity to spend time with her & get to see their everyday life.  I was spoilt rotten & it was such special bonding time.  We got to chat, cuddle, catch up properly & see so much!  I noticed myself declining during this time, & was napping for about 3 hours every day.  It was horrid missing out on time for her because my body was letting me down.

My life is enriched by this beautiful sister

Proper High Tea

And now, on to the real point of this blog...

This is so difficult for me to write, & this is why I have avoided writing anything for so long.

We have been through the stages of Grief:

1.  Denial  (This can't be real!)

2. Anger  (Why me?  This just isn't fair)

3. Bargaining  (If I get better, I won't take my life for granted; & all the "what-ifs")

4. Depression  (I didn't want to leave the house, & cried for anything)

5. Acceptance  (I am still trying to get here - but its getting better)

We have spoken to many doctors & they have met with each other to discuss my case.  This is the cold, hard truth.  We have not really sat & thought about what this means for us, until this most recent relapse.

The doctors have now said that they do not have a plan for me, & there is nothing else they can do for me.  

We were really praying that the newest medication would make a difference in my life, but I am slipping further back every time.  My relapses are coming quicker & closer together, with it now affecting my breathing.  My MG has officially progressed to the brittle, refractory form & what used to work for me no longer does.  I am in a constant fight against myself & it is absolutely exhausting.

Trying to stay positive!

We are not giving up hope, nor are we just being negative,  We are being realistic, & trying to find ways to make my lives easier to try take some of the stress off my body - hence the walking stick, having a snooze every day & listening to when my body says - woah, ok that's enough!

For so long I have tried to push it to the back of my mind & not allowed myself to "think myself sick".  But we have been told we need to face up to reality.  The longer I have my Hickman Line in, the fewer options I have.  They are concerned that soon I could become immune to this treatment, & it will not make such a big difference to my health.  Plex/plasmapheresis is what is keeping me alive.

Before coming in for this treatment, these were my symptoms:

I was unable to get off the floor; battling to swallow right from breakfast; slurring my words; unable to pick anything up from the cupboards; unable to reach for anything above my head; unable to hold my head up when bending forward; drooling constantly; unable to give husband/our animals a little kiss; I battled to breathe when lying flat on my back; I had to rest after having a shower & just felt completely drained.  I just cried constantly.

Just starting my third Plasmapheresis in this round of treatment

I am going to see a specialist in Cape Town early next month to see if she has any advice or ideas of what we could do.  My doctors here have been communicating with her, but we have decided that it would be best to actually meet with her in person so she can test my muscle strength herself.

We do not know if we will get any more answers, or if she will have a plan.  This could be the time to try make my life as comfortable as possible; or it could be something completely off the grid that she thinks of that could work.

We are not giving up hope of a miracle, but we are also acutely aware that there may not be a way forward for my Myasthenia Gravis treatment.

My heart is heavy, & writing this blog is extremely difficult.  I don't like to face up to this reality, & never, ever want to be seen as being negative.  Being positive & seeing the good in life has got me through so much.

Please stand with us in prayer.  

We need a miracle.

Chronically Ill

As I write this, I am lying in my hospital bed - for the third time in under 3 months.  And let me tell you, it doesn't get any easier no matter how often you come to hospital.  I still get butterflies in my tummy when I know I am coming here & dread the idea of more time away from "normality".  I am back for more plasmapheresis, & although I love feeling so much stronger, I HATE having to be admitted again & the fact that I cannot function as a normal person.

When you first get diagnosed with a chronic illness & have to go to hospital; you get visitors every day - flowers, cards, messages & phone calls.  After a while these begin to dwindle (understandable as it seems to be a frequent occurrence) & after 12 years it is pretty much non-existent.  We don't expect people to fawn over us & act like we are dying every time we have to be admitted, but please do understand that coming to hospital is never something we would choose to do.  It is not a fun place to be.  We know what is going to happen & the pain that will most probably accompany our stay.  We know what it is like to be away from our family & friends; & we still get nervous about coming in. It hurts when family/friends seem blase about our time in hospital or almost don't care.  The days & nights are long here, & every little message or phone call means more than you could ever imagine.  You may not get a response from us straight away, but it gives us renewed hope & our heart becomes slightly fuller thanks to your love & concern.

Being chronically ill means you still try to function as a 'normal' person, & then pay the price for it later.  Our lives have been changed forever & 'normal' for us is now numerous doctors visits; blood tests (& knowing which vein they should use!); finger pricks; & permanent ports.
It means calling your doctor by her first name & having her cell phone number stored for any emergencies; it means knowing more medical terms than some nurses; & it means hours of research into treatment options overseas.
Being chronically ill means you are covered in scars - each one a reminder of a battle you have fought & won.  It means you have had to grow up before your time, but still enjoy acting like a foll every so often.
Having a chronic illness means walking into High Care & having the nurses know you by name; it means never being able to leave the house without your medicine; it means planning for a night away to ensure you are covered in case of any emergency & have the necessary drugs.
Having a chronic illness means your medical savings are finished at least half way through the year - and that's if you have had a good, healthy year!  It also means the pharmacist knowing you by your name & having your medicine ready for you when it is time for your script to be refilled.
Being chronically ill means you have had pipes & tubes inserted into your body to help you function; it means the side effects of your meds leads to you needing to take more medicine; & it means you can't simply take over the counter medication without researching it thoroughly.
Being chronically ill means you most probably know how to connect your own heart monitors by now & can probably even attach your own blood pressure cuff  without a nurse's assistance.
Being chronically ill means you have probably missed your own birthday party; it means you have probably slept through a Christmas lunch with the family & it means you have been called rude at least once in your life - even by your own family.  It means owning more pajamas than normal clothing; & still getting excited when you get given more.
Having a chronic illness means you have to learn to be strong & understand that hurtful words more often than not come from a place of naivety & lack of knowledge.  You will learn that certain people always think that they know better - let them.


It means you know how to smile when all you want to do is cry.  It means you keep your brave face on until you can be alone & let the tears simply flow.  It means you never give up.  No matter what.

Fighting every day to stay alive is not easy & of course there are moments where all you want to do is give up.  Never lose hope.  Surround yourself with happy, supportive people.  And know that you are a warrior.  And you are amazing.

Living through Infertility

This past year seems to have passed in a complete blur… 

Our focus has been on trying to have a baby & unfortunately everything else seems to have fallen away, or simply skipped over.

We were told last year that our only option to have a baby was to have IVF.  I can also only be on certain medication for my Myasthenia Gravis as many of them cause major birth defects & we aren’t willing to take that risk.  So I cut down on all my medicine, pumped up the supplements & vitamins & started trying to have a baby.

We were married in October 2012 & knew that we wanted to have children right from then.  However we weren’t in a great hurry as we were in the dark about all the problems that my body was hiding.  We were trying, but not charting or checking ovulation & so on – we were just enjoying being married & getting to grow as a couple.

In 2014 when still nothing had happened, we decided to visit a special friend of mine that is a Homeopath & Chinese medicine practitioner that specialises in infertility.  In fact he has been able to get people pregnant that were not able to conceive with IVF!  I was filled with hope & very excited to get started.  A year of herbs; weekly acupuncture & consultations; & a healthy diet unfortunately did not bring us a baby.  It did get me feeling a lot better, seemed to bring my Myasthenia Gravis under better control as well as regulating my cycle.

I returned to my gynae who said that we needed to go for IVF.  I had blood tests that showed I had very few eggs left & they are a very poor quality.  This means that time is of the essence & we do not have time to mess around.  Yes I am only 27 now, but due to the years of medication & my disease, there are a lot more complications than a ‘normal’ person would have.

We went to a specialist in Durban for an initial consult & I left in tears.  He was so negative & uncaring that I felt like I was just a pay cheque to him & not a person at all.  He told me he doubted anything would work & he wanted to do an operation to remove my endometriosis – this would cost us R30,000 & I would be in the day clinic.  Firstly, this amount is astronomical & he wanted it paid in cash before he would operate.  Secondly, going under anaesthetic with Myasthenia Gravis poses a huge risk.  Anaesthetists do not like dealing with myasthenics as there is a chance we will not wake up.  After every operation of mine I have had to spend the night in high care & be monitored closely to ensure I am coping.  So the fact that he was willing to just send me home on the same day sent up red flags in my mind – how much does he really know about MG??

After discussing this with family & friends, my husband’s uncle suggested we try a clinic in Bloemfontein who has really good results & also charges a lot less than a private clinic.  I researched Universitas Hospital & found so many positive feedback comments.  Because this is a government hospital, fees are cut down to the bare essentials.  We made an appointment for the earliest available time & waited for the next few months for our time to come.  In the meantime I had to have an operation to remove my endometriosis, as well as my right ovary & tube which had become too badly damaged by my constant cysts & endometriosis.

It is a 12 hour round trip to Bloemfontein from Pietermaritzburg, but we were willing to travel if they were willing to help us!  I cannot begin to put into words how wonderful the staff are there.  Straight away we knew that we had made the right decision as we were welcomed with smiles & made to feel so comfortable.  They held a discussion with the professor of the infertility clinic, as well as support staff & came back to us with a plan.

In October we had our first round of IVF.  Now let me tell you, there is a lot that you are not prepared for!  You start injections on day 3 of your cycle – this is usually just one injection a day to start off with, & builds up to 4 a day.  For someone with a very real fear of needles, this is a terrifying prospect.  You have to go for an internal scan every couple of days to measure the growth of your follicles & to ensure the doctors are happy that everything is progressing as it should.  The hormones that are suddenly flooding your body wreak havoc on your emotions & I often found myself crying for absolutely no reason at all.  As your follicles grow, so the pain in your abdomen increases – imagine a bunch of grapes surrounding your ovary & this is what you feel like.  It aches, there is pressure & you start to feel quite miserable!

Then comes the retrieval…  You are under anaesthetic for this procedure, & they insert a massive needle attached to the ultrasound probe to aspirate eggs from the follicles surrounding your ovary.  It can hurt a bit afterwards, but nothing that us women can’t handle!

We then wait to hear how many eggs fertilise & how many continue to grow.  I had my embryo transfer 3 days after retrieval & this really isn’t bad.  They insert a tiny catheter & the embryos are transferred directly into your uterus where you pray they stay.

We were truly blessed with our first cycle to discover that I was pregnant!  Once little embryo had taken up home & was making itself comfortable.  I couldn’t believe it & our entire family was over the moon.

Unfortunately this was not meant to be & I miscarried at 10 weeks.  Never in my life have I experienced something so awful.  I would not wish it onto my worst enemy.

The positive side of this was that I had managed to fall pregnant, even though so many people had told me that this was not possible.

We tried again in March for hopefully a more successful round, & although everything went perfectly, it didn’t work.  Our little babies were not made for this earth & made their way straight to heaven.

Over time all of this stress & emotional uphill has broken me.  My heart is heavy & I can feel that my MG once again has control over me.  I am slurring my words; choking on my food; & can’t hold certain things.  I cannot crochet for long periods of time without my hands giving up, & I have trouble doing up buttons on my pants.  I am tired the whole time & I am starting to battle with walking long distances.

Unfortunately this means that I need to go back onto my stronger medicine for my MG & focus on getting my health back to where it should be, as well as getting emotionally strong once again.  This has not been an easy decision at all, as this means the end of our IVF journey.  I still get tearful thinking about it & my womb aches for a baby of our own.  The medicine takes a year to properly kick in & I would need to be on it for at least 2 years to get properly healthy once again – after which I would need to be off this for a year in order for all traces of it to leave my body before we could start trying again.  This means I will not have any eggs left.

Myasthenia Gravis is a constant battle that I am fighting & I just want to thank all the strangers, my family & some of my friends that have been so supportive throughout this trying time.  Infertility is a terrible thing & I wish more people would be open about it.  It is not something to be ashamed of, but rather awareness needs to be created.  People need to be accountable for their words, their actions & aware how something simple can be so devastating to someone trying to have a baby.

I have felt isolated during this time & have found myself withdrawing further as I cannot deal with certain people; & the way they treat me & my husband.

Please, be kind to one another.

Offer support.

Be the person you would want in your life.

And don't ever, ever give up!

Happiness is...

Going through the last (almost) 11 years battling with Myasthenia Gravis hasn't been easy. I have been down; fought as hard as I could; missed out; cried; given up on occasions; and questioned why this has happened to me.

There have, of course, been many amazing times filled with laughter; excitement; growth; and enlightenment.  Below I have listed some ways in which I have kept up my levels of positivity and made it through.  Maybe you can relate to some of these, or maybe you hadn't thought of going out of your way to look for things to make you happy & lift you out of your current slump.  I am hoping that some of mine will make you smile & perhaps point you in the direction of finding your own happy things!

1.  The Bible.
This book has the answers to every question you could possibly have - plus more.  So often God has spoken to me in my darkest hour through His word.  It has given me hope & pulled me through when I was so close to giving up.  An example is Jeremiah 29:11 which says: "For I know the plans I have for you, declares the Lord, plans for welfare & not for evil, to give you hope & a future."  God wants the best for us, & sometimes we are put in situations to discover how strong we truly are; as well as showing us that we need to give all our troubles over to God for Him to deal with & help us cope.

2.  Happy Song
There is always that one song that gets you going - and if you don't have one, then find it!  It may change from one week to another, or it may be "your song" for a couple of months.  My last few songs have been "Waves" by Mr Probz; "#Selfie" by The Chainsmokers; and currently it's "Shake it Off" by Taylor Swift.  (Watch the music video here & you will understand why!).  It doesn't matter if you don't know all the words, or what other people think about it.  It can be an amazing rhythm or have words that seem to speak to your soul - but most importantly is that it should make you want to get up & dance.  It should make you forget your problems (in my case, maybe I had a day of slurring my speech & feeling really weak) & just want to bounce around the house belting out the tune!  I even have little 'parties in my car' when happy songs come on & dance like nobody is watching - I have been caught by a few of my friends (and probably strangers), but is it not better to be seen having fun than sulking & feeling sorry for yourself?  I think so!

3.  Something pink
This is something very personal but something that has helped me right from day one of being diagnosed.  I ALWAYS have something pink with me.  This is my favourite colour - it is bright, cheerful, the colour of love & most of all it makes me happy!  During all my hospital stays, I usually take my own pillow in a pink pillowcase; or wear pinks PJs; take a pink fluffy toy; or have pink flowers next to my bed.  At one stage my sister tied pink flower head bands above my bed as I was battling to move & at least that way I could still see something cheerful.  In fact my doctor would always know which bed was mine due to this fact, & the one time she came to visit me in ICU & I didn't have anything pink with me yet, she went out & bought me a pink unicorn stuffed toy!  Now that my disease is more under control & I haven't spent as much time in hospital I found I have lost touch with this little bit of happiness, but looking through my bag I still have a pink pen, a pink cover on my kindle & a pink notebook.  And I know when I have to go back next time, I will most probably take my pink bunny with me to keep me company.  Who wants to grow up anyways??

4.  Photos
I take a lot of photos.  I mean a lot!  People used to know that come Monday all the pics from our weekend would be up on Facebook for them to look through, & nobody else really had to worry about taking a camera out with them.  Photos hold a memory of a happy time.  So, often when I was having a bad day & hardly even had the energy to get out of bed, I could look through my pics & remember happy days.  I could look at some & laugh, or send an sms to a friend after remembering an amazing time we had together.  They pulled me through coz I would think about how healthy & well I was at that point in my life, & knew I could fight to get back there once again.  It was also good looking at the pics from when I was first diagnosed; having treatment; or just after my thymectomy - these all helped me to see my progress & how far I have really come in my journey with MG.

5.  Friends (and family)
I don't think I really need to explain this...  Friends are there to lift you up when you are in your darkest place; they love you even when you are unloveable; they call you up out of the blue; they make an effort; & also they make you forget.  They treat you like you are completely normal.  I have one special friend who just seems to know when I am having a bad day & will send me a bible verse out of the blue; or make me laugh when all I want to do is cry; & is teaching me to laugh at myself - as well as to have more patience with myself & my disease.  We haven't known one another for very long, but she just "gets me".  It is so amazing to have those people that you can be yourself with - no acts, or trying to be someone you're not.  I feel it is truly a wonderful thing to have people like that in your life - keep them there.  Work hard on your friendships.  Sometimes you will feel like giving up - on life, on going out, on your friendships & on fighting whatever battles you are in.  True friends won't judge you, & will be there to pull you up & out of the slump you are in.

6.  Reading
I will be the first to admit how big a nerd I am, & that I absolutely LOVE reading.  It transports me away to a magical place; a different world & allows me to escape from any issues I may be battling with.  It allows me to be a normal person, without battles or a disease that controls my life.  It makes me happy; calms me & allows me to live a different life.  Even when I am having a good day & not being "thspecial", I still love to read.  It is something I can do purely for myself.  I can have a lazy day of reading in bed, or a quick 5 minutes before bed.  Try it - you never know how much you may love it!

7.  Furry Friends
Animals give unconditional love.  I can be in the worst mood ever & come home from work to my "kids", & all my frustrations melt away.  Our little dog gives me kisses galore & just wants to play, & our 2 cats rub up against me asking for affection & purring loudly.  They can pick up on emotions & seem to know when you are not happy.  For example the other day I hit my head on the corner of a cupboard door & started crying - one of my cats cried with me & was winding between my legs until I stopped.  It really amazes me, & I cannot understand people who don't like animals or purposefully injure them.  I think those 'people' are really missing a piece of their heart by not knowing the love an animal has to offer!

These are just a few of the things that make me happy when I am down & battling to see the good through my MG demons.  I do still cry & have bad days, but having made this "Happy List", I know now where I can turn to change my mindset & improve my mood.  There are so many more I can add, but then this blog would never end!

If you know me, & would like to add anything else that you know makes me happy, or perhaps any ideas of your own that improve your mood, please comment below.  Lets make the world a happier place, & help one another through the tough times.

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.

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!