Destination Unknown

Last week proved to be very hectic with a trip to Cape Town to see the Prof about what treatment plan we can try out now. I had a round of plasmapheresis again at the beginning of April, this time using FFP - i.e. Fresh Frozen Plasma {Fresh frozen plasma is a blood product made from the liquid portion of whole blood. It is used to treat conditions in which there are low blood clotting factors or low levels of other blood proteins}. I was hoping that perhaps the effects of using fresh plasma rather than the artificial one we have used in the past would make a difference. They also really battled to get a CVP line in due to all the scar tissue that has built up - after 4 attempts in my neck & screaming out in pain, the doctor finally decided to try to insert it into my groin where it slid in easily. Due to all the trauma from the multiple attempts to insert it into my neck, I developed a massive haematoma & could barely move without flinching. I was a misery for at least a week after this, but at least I felt good with regard to my Myasthenia Gravis!

My miserable face - I was so so so sore

I was really praying that this round would last a bit longer & I was LOVING being able to be "normal" for a while - even attending a sewing class & our MG meet-up. I could chat to friends; laugh; pig out on sushi on a date with husband & just generally enjoy my life. It reminded me that I have so much to be grateful for & I really shouldn't take anything for granted.

The Gauteng MG Warriors - some of us

So now, back to Cape Town...

She is so disappointed that I have not responded to the last treatment i tried (Rituximab) & due to the damage in my lungs we can’t try any new treatment until I am completely off my antibiotics. I have to be on these for 6 months & they make me feel ROTTEN! But we can’t take any chances of getting any type of lung infection again as my body would just not cope with it. The antibiotics make me nauseous & lose my appetite (it has been a great diet plan though I guess...) & I have a rotten taste in my mouth. My kidneys have been damaged from the continued use of these too, so I am trying to drink as much water as I can to try help flush them out. End of July I will finally be able to stop taking these & hopefully not have to live on peppermints any more!

Prof has admitted I am probably the worst Myasthenic she has seen as I am just not responding to treatment & my body literally hates me. The funny thing is, she isn't the first doctor to say that to me now! It's like all the little soldiers in my body have the overwhelming urge to go to war, & they don't care with whom.

So for now I am staying on my current medication, just a higher dose to see if that will kick in & help. Once I have completed my antibiotics, we are going to start chemo once again to try kill off my immune system & get it to do what it is meant to! This thought scares me as I have been through this before & the effects on my body are TOUGH. I remember making a bed in the bathroom as there were days I was too weak to make it there in time. But, if I have to go through a little bit of hell to reap the benefits & experience normality then I will take it! I won't have to rely on people for so much; won't have to miss out on social functions & can actually live a full life.

In the mean time I am going to have a port inserted (my veins are terrible & run away any time a needle comes near me!) for my treatments & will have plasmapheresis to keep me from complete crisis - although Prof said I am living in a permanent state of the cusp of crisis. I am booked in at the end of this month to go in to have the port placed & hopefully things will start improving very soon. We just need a set plan, & one that my body responds to.

Date night with husband 

I am not going to allow this disease to get the better of me! It is my 30th coming up soon & I am determined to celebrate this to the best of my ability. Life is for living, there is so much to celebrate & I am blessed in so many aspects.


Onwards & upwards!

I am more than MG

Almost 2 months ago I landed my absolute dream job – helping with administration for Rare Diseases South Africa.  It has relit a fire within me & reminded me about my passion for helping others.  It has woken up my brain (it was starting to turn to mush not doing much at home since July) & really made my heart happy.  I feel like I lost a part of myself over the past few years & was simply floating along doing what society expected of me, & I was allowing others to squash me & my dreams.  I allowed negativity into my life & was more focused on the “sick” part of me, without realising I needed to take care of myself as a whole!

Last week we travelled to Stellenbosch for RareX (an international conference on Rare Diseases – the first of its kind to be held in Africa) & I feel like I really learnt so much.  I met people from all over the world; was privileged to listen to speakers from different areas of the rare disease society; & medical professionals, patients & pharma companies were intermingling without any feeling of “not being good enough”.

  

Our welcome to Spier conference centre

The Rare Diseases SA stand with some of our "Rare Bears"

"Support in a Shoebox" explaining MG in simple terms - of course lots of snowflakes, a spoon, a ragdoll, an explanation of MG, & some of my medicine containers.

Although I pushed through long days, was on my feet for hours & chatted to everyone I could; I was happier than I have been in ages.  Every night we had something going on – dinner with friends, a cocktail party, a gala dinner, or just an evening in the bar.  I made new friends; drank wine; danced like a crazy person & laughed until my stomach & cheeks were sore.  My endorphins were out of control & I finally felt like the old Megs was back!  I allowed myself to have fun instead of just being boring & responsible – as per usual.  It was also so amazing telling people I had Myasthenia Gravis & they knew exactly what I was talking about, & could even offer some advice/encouragement.

Shevaun, Kelly & myself on day 1

 I have realised that for so long I didn’t allow myself to have fun because I was so scared of the after-effects on my health; but also I allowed other people’s unkind words to control what I could & couldn’t do.  I realised people aren’t judging me when I start slurring, & friends will always laugh with me – not at me.  I felt like I was floating throughout my time there, & it has continued since I returned home.

With my new friend, Christina, from Kenya

It was a great reminder that Myasthenia Gravis isn’t all there is to me – I am still Megan Toni & I need to take care of all aspects of myself.  It is important to still have fun.  Take time to rest & take care of yourself; but still nurture every other part of yourself – emotionally, mentally & physically.  Make your heart happy; tell jokes; feel free to make a fool of yourself; don’t allow yourself to become a ‘plank’; laugh as often as you can; & make new friends wherever you are.  This will all help bring out the part of yourself that may have completely disappeared over the years of being chronically ill!

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.

An unexpected addition

When I finally moved to Jo'burg to be with husband, (the short story is that I was not coping health-wise anymore, & could not even make it through a full day of work without feeling like I was going to pass out driving home & so came to our new home earlier than expected.  I was worse than I have been in years & was terrified of hitting full-blown crisis & thus being separated from my husband for even longer.) I had an appointment with my new neurologist in order to discuss our plan going forward.

She examined me after discussing all my previous medical history & treatments; & said weakness of my facial muscles is pronounced, with my talking very nasal & my uvula not moving at all.  I could not get off the floor without assistance; could not hold my head up against any resistance; my eyes do not close; i couldn't hold up my arms for any amount of time & I was absolutely exhausted.  She was concerned at just how bad I was & sent me for a battery of tests to see if we can get any further answers.

Straight away I went to have blood tests to check my antibody levels; liver function & all sorts of other things - they drew 10 vials of blood in total (yes, I almost passed out & had to sit quietly once they had finished - I am still a huge wimp when it comes to needles).
I then had to go for a CT scan of my chest in order for them to check if my thymoma had come back (I had my thymus gland removed 2 months after I was diagnosed, but if they had left anything behind, this can grow back & cause further antibodies to be produced).  With a CT scan you have to lie very still - you have to hold your breath whilst they are taking the "pictures" so that nothing moves.  They run a drip of dye in that helps them to see everything more clearly - this drip makes you feel warm all over; gives you a metallic taste & makes you feel like you have wet your pants.  Not something they always warn you about so it can give you a bit of a fright!

In my sexy hospital gown waiting for my CT scan

The doctor & I discussed our plan going forward to try get me back to some form of normality & hopefully give me some enjoyment of life.  She has decided that I need to have a permcath inserted as I will need to go for multiple sessions of plasmapheresis & I cannot always have a temporary line inserted - this has become very painful & I have extreme scar tissue build up on the inside that makes it more dangerous & difficult for the doctors.  I will not be able to work for probably the next year due to all my treatment, & the fact that I will be in hospital for at least a week at a time for my plasma sessions.  This places huge financial strain on my husband who now has to carry both of us, & this stresses me out a bit.  However, my CT scan came back clear which is fantastic news!

I was admitted last week Thursday & taken to theatre - right before I went under they were still discussing if they were sure they wanted to insert the perm cath as my MG was really misbehaving, & I am already a risk going under anaesthetic.  We didn't want to take any unnecessary chances!  However, the necessity of getting my strength up outweighed the risks & after a quick prayer I was told to count backwards from 10; & the next thing I knew I was in recovery coughing out the pipe that was down my throat.

The ladies taking care of me in recovery were lovely & took such good care of me.  They stick this amazing pipe under the blanket that blows hot air on you so you feel toasty warm!  They came to take x-rays of my pipe to make sure everything was in the right place, & then I was taken to High Care (where husband was patiently waiting!) where I would spend the next couple of days for my plasmapheresis sessions.

An illustration showing what was done to me & how the pipes work

I had no idea what I looked like, or how much was actually sticking out of me.  I had acted like an ostrich with my head in the sand beforehand & didn't research anything - in fact I thought I was having a little port fitted like what chemotherapy patients have done.  So I got quite a shock when I had a look down & saw all these plasters & 2 pipes coming out of my boob area!

During my very first plasma session after having the permcath inserted

I was very sore that first day & didn't want to move too much - luckily the anaesthetic kept me quite sleepy & the pain killers pretty much knocked me out after that had worn off!  I didn't try be a hero & cope without pain killers as I have learnt my lesson from this before.

The next day I could already smile!  One treatment down & I felt like a new woman!

The top plaster is where they went in - they feed the tubes from here into my heart, & then use a guide wire to feed the tubing under my skin & out a little lower down to attach the outer connections to.

Showing all placement - excuse the heart monitors but these are a necessary fashion accessory in High Care!  You can see some of the bruising already coming out.

After 2 sessions of plex (plasma exchange) I could already feel a huge difference.  For the first time this year pretty much I was able to swallow my supper without choking & wasn't having to toss my head with every mouthful.  The doctors were super chuffed with my improvement & decided I would have 6 sessions this time around & then I would come back in 3 weeks for another 6 sessions.  Having them closer together will help to remove all traces of my antibodies before my body stores up too many again & hopefully I won't head towards crisis again!

I was so lucky to meet a fellow Myasthenic who I have been chatting with online & is in a support group.  She has always been such a sweetheart, so positive & always encouraging.  In fact she was the one who recommended my new neurologist & made me feel safe about starting with someone new.  Dyanne  was admitted into the bed next door to me for her rounds of plasma & it was such a treat finally being able to meet face to face.  She had had a really long journey to receiving her diagnosis & had initially been misdiagnosed with all sorts of other diseases before her drooping eye gave the doctor her "aha" moment that this is MG.  It was so lovely meeting another snowflake & having someone I could talk to, knowing that I was completely understood & wasn't being judged.  We laughed together, bonded over our new book (both of us had bought "Harry Potter & The Cursed Child" to hospital with us to take our mind off things) & just chatted about life in general.  I am truly blessed to have made a new friend, & know that we would probably not have met were it not for our MG!

Dyanne & me showing off our ports!

The doctors & nurses couldn't believe the difference in my talking, swallowing & general strength after a few sessions of plasmapheresis.  I had some special friends come to visit me in hospital & they commented on how they couldn't believe it was the same person!  It always makes me feel so good hearing that other people are seeing a difference in me & when they can get excited with me.
The only thing that frustrates me is when certain people make out I am so much worse than I actually am in order to make use of the sympathy card for themselves; or when they tell my family outrageous stories that aren't true,but make it sound even more exciting - not cool guys.  I don't need any more drama/spice added to my health issues thank you very much :)

I was discharged & am now at home relaxing, taking things easy, but also loving the fact that I can crochet again & have a bit more energy to cope with life in general.  My bruising has come out a bit more since being at home & is now a beautiful dark purple (thanks cortisone for making this look even more dramatic!)

The bruise starting to come out a bit more

The pipe you can see under my skin.

These pipes can stay in for the next 2 years if I take care of them properly.  I am not allowed to get anything wet & have to go for a dressing change once a week where they will properly clean everything, flush out my pipes & replace the waterproof dressing (oh, did I mention that I have developed an allergy to this plaster, but just have to suck it up as there is no alternative!).  Showering is rather tricky & I am trying to figure out how I can wash my hair without getting any water down my chest, but I am sure that over time this will be something I can do without any stress.  I also can't wear a bra as my pipes are just in the wrong place & I can't risk moving them by having a bra rubbing against them throughout the day (#freethenipple was not something I ever thought I would be supporting!).  These are just a small price to pay to feel like I do & to have the quality of life I do right now compared to only a week ago.

Appreciate your health & never take for granted the miracle that your body is in its constant functioning.  It is only when things go wrong that you begin to realise how amazing the human body truly is!

Moon Face

One of the joys of having an autoimmune disease, is that you are more often than not put onto an immune suppressant drug.  One that will help your body stop attacking itself, but will also leave you susceptible to every little germ that comes your way.  This is why I try to stay away from large crowds, & often don't visit friends when they are ill.  It is not for lack of caring, but rather for fear of being bed-bound after a quick chat.

One of the medicines I have been put onto is called Prednisone (a type of cortisone).

These small white tablets are very deceiving!  They don't look like much, but boy do they come with a list of side-effects.

Long-term use of steroids may lead to bone loss (osteoporosis), especially if you smoke, if you do not exercise, if you do not get enough vitamin D or calcium in your diet, or if you have a family history of osteoporosis.

Others include:

• stretchmarks & scarring (due to thinning of skin)

• sleep problems (insomnia), mood changes;
• increased appetite, gradual weight gain;
• acne, increased sweating, dry skin, thinning skin, bruising or discoloration;
• slow wound healing;
• headache, dizziness, spinning sensation;
• nausea, stomach pain, bloating; or
• changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).

But, the positives often outweigh the negatives.  Being on prednisone seems to have given me strength again & helped get my MG under control.  However it has ruined my self-confidence (not that I had much to begin with).  I was never one of the popular kids, or one with lots of friends.  I never had guys after me, & I have never felt "beautiful".  I have never felt like I have fitted in anywhere, & have constantly felt like an outsider looking in on everyone else enjoying life.  This has allowed me to grow internally, & to try to be the best possible person I can be mentally & emotionally.  I still feel like the odd one out, & get very embarrassed walking into a busy room (even if it is full of people I know).  Add to that a "moon-face", pimples, & now my pipes sticking out of my chest; & I often wonder if it wouldn't be easier to remain a hermit??

However, I will not give up & I will not allow my insecurities to get the better of me.
I won't be on prednisone forever, & if it is saving my life then all these horrid side-effects are worth it.

Looking back over photos of the last 12 years, where I have been on varying amounts of prednisone have shown a huge difference in my face shape & size.

At my 21st with my fabulous neurologist - I was very bad at this stage MG-wise & could not even smile.

Last year when I wasn't on any prednisone.

Current moon face.  This is the most difficult photo to have to put up as I feel disgusting.  I have probably deleted it & re-posted it about 5 times.

I will get healthy, & I will get my self-confidence back!

The mysterious giggle

Reading over my past couple of posts has made me realise that I seem to have been a moaning misery lately, & that is not me at all!  So today is just a quick post to show the lighter side of MG & share some of the giggles I have had through the tough times :)

Recently I had to go to a GP for a quick consult as I felt like I was coming down with something...
She told me she hadn't heard of MG since she was studying & couldn't remember exactly what it entailed - so I had to give her a quick lesson before she got anything wrong or prescribed me something that I am not allowed.  She also read up info in her little book that she had to ensure she was on top of everything.
I have now learnt to carry little cards with basic information that I give to the pharmacy & new doctor's that I go visit.  Oh the joys of a chronic illness!

I have realised I will never be able to stop taking medication (shake, rattle & roll baby!), & I will probably have to see a doctor for the rest of my life.  Majority of the time I eat my meals just so I can take my medicine & ensure I am getting the nutrients & chemicals I need to survive.  

So when I saw this next image, I couldn't help but giggle.  Who needs money when you can get scripts for life-saving medicine?  Yay!

This final picture was sent to me by a very dear friend who is a nurse at a government hospital.  We only met due to my health concerns, & now I can't imagine my life without her.  She always knows just what to say, & makes me laugh constantly.  She is the most caring person; & going into the doctor's rooms & seeing her there can turn my day around completely (for the better).

She saw the below on a ward chart of a patient, & sent it to me to see if I could make out what the diagnosis had been that the nurse wrote down.

Can you make it out?  Every time I think about it I start chuckling to myself.  As she said, it describes the symptoms of Myasthenia Gravis quite aptly!  We are rather mysterious...

I have had my illness called by many names (my-ass-is-thinner gravis; my-as-ta-hernia gravis; my-ass-theee-nya gravis); but never mysterious gravy as above!

And that's it for today.

Short, but just to hopefully bring a smile to your face as it did to mine.

Thank you for all the love, concern & messages that have been poured out over me during this trying time.  I really appreciate it (& you!)

Faking it

Today has been tough...

Battling with my strength & just found out that I have gone over on my leave for the year - as well as not having any sick leave until 2017.

So many emotions flying around & tried to get them out as simply & quickly as I could.

You ask me if I am ok

I say yes

And smile for you.

I turn to walk away

The smile falls

And I don’t have to fake it anymore.

Inside is a battle

Fighting against myself

Still keeping up a front.

Every day is unknown

Concern and fear

Getting weaker – emotionally and physically.

Know the real me

Beyond what I put on for the world to see

I am a fighter.

Getting through the day

Always trying to be strong and cope

Falling into bed – at last.

Why did this come?

When will it end?

Why me?