The importance of being...

Hello  2016 you beauty!

I still cannot believe how quickly 2015 passed me by, but more scarily how long it has been since I have actually sat down & written a blog.

2015 was filled with hospital visits; leave from work; IVF appointments; falling pregnant; losing our baby & too many emotions to even begin to mention.  I have really missed sitting down & putting my words down about what it is like living with MG but I have allowed life to get in my way.

2015 taught me the importance of the following things (sick or not!):

1.  Family.  They are your blood & will be there for you even when you don't expect them to.  They love you, encourage you, & come cook you dinner when you can't even get out of bed.

2.  Friends.  They are your chosen family.  If you can count your true friends on one hand then you are blessed.  They are the ones that are there for you through thick & thin; tears & laughter.

3.  A Hobby.  In 2015 I discovered that I love to crochet.  It takes my mind off things & although I sometimes battle to hold my hook, it has become a real passion of mine.  I can't wait to create more in 2016!

4.  Alone-Time.  Often we feel like we always have to be around someone; putting on an act of complete happiness & acceptance; & looking after everyone around us.  This isn't true.  Do something for yourself, make yourself happy & don't allow others to put too much pressure on you.

5.  A Simple Smile.  When you have been having the crappest day ever, it is amazing what a smile & a kind word can do!  It can be from a complete stranger, a work colleague or even your loved one.  It makes you feel like you matter & reminds you that the world is not such a bad place to live in.

Love those close to you, & never lose faith that your miracle is just around the next corner!

Much love, hope, & faith coming your way xxx

Rubber Fingers

Do you remember going to watch a magician when you were little, & he would hand you his magic wand?  It would be a perfectly "normal" wand in his hand, then turn out to be a tricky rubber wand that fell limply towards the ground?  This is exactly how my fingers feel at the moment...

These last few weeks seem to have made my fingers decide to go through a "teenager" phase & not listen to a single thing that I want them to do!  It is so difficult to explain to people what it feels like, so I thought I would write about 10 everyday things that I am battling with during this miserable winter & the effect that the cold is having on my fingers.  So here it goes.

10 Everyday Things I Can't Do (for now...)

1. Wash my face properly.  My fingers don't close together so the water simply slips through my fingers salt salt through a sieve.  I have made a plan with a facecloth & it just takes a bit longer than usual.  This morning I noticed it was my pinkie in particular that just wouldn't lift up or come close to the others, then my ring finger also decided to play the fool & move away from the others.

2.  Do up my pants.  You would be amazed at how difficult it is to be able to do up your pants - especially the button on jeans.  It is a lot trickier than you would think when your fingers have no strength & go off in every which what direction.  My husband has had to dress me & after going to the loo at work I have had moments of having to ask someone to help me do my pants up again!

3.  Carrying packets.  My fingers don't have a lot of strength in them & I have dropped countless things before learning my lesson & using a trolley around the shops, & then asking someone for help to lift these into my car.  I also have a fabric tote bag that I can put over my shoulder for any small trips to the shops - no more broken eggs to split packets for me!

4.  Undoing lids.  Again, it's the fine movements that I battle with.  I can't get a good enough grip on the lid & my fingers splay off in all sorts of odd directions which makes it near impossible to open lids - I have learnt to make a plan with knives etc but more often than not I take it to my superman husband to do for me.

5.  Unlocking a public toilet door.  Being locked in a public loo is not fun - let me tell you that.  And it is even worse when my talking isn't good so I can't shout for help because people think I am either a crazy person or a drunkard.  It is a lot easier to lock the door than to unlock it & get out; & I have had quite a few close calls.  I really have to concentrate, take a deep breath & sometimes make use of my shirt by bunching it up & putting it over the lock to try open in.

6.  Tying my hair up/putting clips in.  My fingers splay in odd directions, won't hold onto a hair elastic & more often than not my hair ends up in a knot around the elastic!  Eventually I learnt my lesson & I now keep my hair short & easy to manage - although sometimes I still need a little assistance to get my clips in to keep my fringe off my face.

7.  Doing my make-up.  Small sponges, eyeliner, precision, & concentration.  I love doing make-up & considered a career in this industry after studying beauty & spa therapy for 3 years.  However on days like this I am rather glad I didn't follow my dreams & rather followed the practical route of something I can do even on my vrot days!  I love numbers & I love making use of my brain, but I do really miss the creative aspect of beauty therapy & make-up.

8.  Cutting up my dinner.  I feel like a small child in the fact that there are many nights I have to ask husband dear to cut up my dinner for me as my hand slips around the knife & I can saw my food for ages to no avail.  It is always worse at night when I am tired, the sun is down & it is freezing in our little house.  We usually have soft foods that provide for easier eating & swallowing, but sometimes it is good to have some real meat - even if I do have to ask for help.

9.  Crocheting/colouring in.  These are 2 of my favourite hobbies & unfortunately they make use of my hands.  Often I will be halfway through a pattern/picture & my hands will just give up.  They will flop like wilting flowers & no matter how hard I concentrate I cannot get them to co-operate & do what I want them to.

10.  Using my phone.  Today for the first time I couldn't sms using my thumbs.  I was a real geriatric using my one finger to tap each letter & it took me a couple of minutes to get the full message out.  No more games on my phone or anything that requires extra unnecessary energy.  I have also been taking quite a few breaks through this blog as I try find ways to warm my fingers up, turn on the heater & give my fingers a break.

This is nothing to worry about, & although most of the time I can laugh when my fingers go loopy, there are still times when I get terribly frustrated with myself.  It is to be expected though.  I never thought I would have to get someone to dress me or help get me out of a locked bathroom or even cut up my food.

Keep warm friendies & take care of yourself xxx

Awareness Month

June was Myasthenia Gravis Awareness month & I was absolutely blown away by all the support I received!

I have started an online platform where I can sell all sorts of MG support goodies, such as awareness pins, hoodies, cushions, shopping bags & so on.  Friends, family & fellow snowflakes have really been supporting me in this & I always get a smile on my face when I see one of my products out there in the big wide world for others to see.  If you live in South Africa & would like any of these products, you can view what I have here.

Awareness Pin

Car License Sticker

Cushion Cover

Cushion Cover

Tote Shopping Bags

There should never be a day where you aren't making one more person aware of something new.  With awareness comes understanding, compassion & love - which everybody needs more of!

I was also very excited to have a feature in one of our local newspapers yesterday.  This was to try help create awareness for the Rare Disease Society of South Africa but also to let other Myasthenics know that they are not alone in this fight.  I have received such positive feedback & it was a beautifully written article.  So thank you for your help!

Next week Sunday is the Color Run in Durban.  If you would be interested in joining this fun event, why not do it for Running4Rare & help create awareness at the same time?  I really think this is going to be a day for the books & cannot wait to experience this for myself.  You can enter here.

Just a quick blog, but wanted to let you know I have not forgotten about you, nor this blog.  There has just been so much going on & I was off for almost 2 weeks due to an operation on the 18/06/2015.  I am slowly easing back into normality & trying to get on top of everything.

P.S.  If you want to read the article, go check it out here & give me your opinion!  There was also a brilliant article written about the Rare Disease founder, Kelly & her gorgeous son Juan who fights Pompe.  Well worth a read here.  Kelly, you are an absolute inspiration & I want to thank you from the bottom of my heart for all you do for the people with rare diseases whilst battling through everything in your own life & your very sick little boy.  You provide support, love & a platform whereby we can reach out to others.  Together we are strong xxx

Struggling

Currently I feel like my brain never shuts down...

From the time I wake up until my head hits the pillow, it is like my brain is running at 120km/hr.  

I am super stressed.  We have to raise R60,000 in order to fund our IVF treatment (read our story here) & I cannot stop thinking of/praying for fundraising ideas or some kind of miracle.

Because I am stressed I am not sleeping properly at night time.  I am in pain with my endometriosis & cysts; & this pain often wakes me up as well.  Because I am not sleeping properly, my Myasthenia Gravis is acting up.

I am battling with slurring my words right from when I wake up - usually this only happens from about lunch time when I am starting to get a bit tired, but now I seem to arrive at work battling to get my words out properly.  It is so frustrating as I want to keep people updated with our IVF journey & what raffles etc we are currently running, but it is too much effort to get my words out.  I get tired so quickly & cannot say a full sentence without the words coming out wrong.

I find I am also battling to swallow.  For example the other night I couldn't swallow my dinner so husband ended up getting me a smoothie as it is easier to get down & I can't choke on any small pieces of food that may go down the wrong pipe.  And when I eat then my talking goes down even more!  It is a vicious circle I am currently in & I am battling to see my way out.

Myasthenia Gravis is something that never leaves the sufferer.  Normal daily activities can worsen it to such a degree that you may need to be hospitalised.  I never know what the day is going to bring & how I will cope.  We try manage it to the best of our abilities & my husband is amazing at cooking dinner, cleaning up around the house or distracting our animals so I can go have a rest.  But, I still need to live my life!  I need to be able to go visit friends or go shopping at the mall.  I need to be a 26 year old & not some old lady that has given up on being able to have fun with her friends.

Enjoying a wedding with this man by my side

Some days I feel like I am superwoman & almost 'normal' but then reality kicks in & I am reminded that my MG still controls what I can & cannot do.  I cannot run up & down stairs when I'm in a rush at work; & I have had to put away my high heels as I cannot walk in them without falling over.  My eyes hurt coz I can't close them so they are extremely dry & by the end of the day I am seeing double of everything!

Last night I had a dream that one of the directors at the company where I work came up to me & told me that I am not living my life the way I should be & I need to look at my priorities.  He said I was disappointing him with certain decisions I have been making.  Is that my subconscious?  Do I know that I am old before my time?  Do I realise that I have too much stress in my life right now & I need to let some go?  What am I doing that isn't good for me or isn't good for my health?  I went & spoke to the director today & he asked me to take a look at my life as maybe I am being too hard on myself.

It is my birthday on Saturday & this is the first year I have not felt like celebrating.  I have too much going on in my mind & would rather my birthday just pass by as another normal day so I can focus on what is really important.  This is so unusual for me.  I am one of those annoying people that starts talking about my birthday a month before; planning a party with friends & family; & creates a wish-list just in case anyone asks!  I actually forgot it was my birthday until the other day when my brother asked me what I would like as a gift.

I currently feel like I am snowed under worries & concerns & just trying to cope with getting through each day.  It is not for lack of support & love received from very special people - friends; family; & even strangers have been sending me amazing messages & supporting us financially (towards our IVF) when possible.  We are going through some major changes in our lives & I hate the fact that MG has robbed us of living a 'normal' life & destroyed my dream of falling pregnant naturally.  We don't even know if my eggs can be fertilised & the fertility specialist said this is largely due to having an autoimmune disease.

But, I will fight through this.  I will come out victorious & share a miracle with the world when it comes.  I am in a daily battle with myself & against my body.  Time is against us & I am praying for the day when a doctors visit gives us good news & not another shock.  Just when I think we have heard it all & we are coping with our full capacity, we are thrown another curveball.  Not too sure how much more I can handle to be honest!

I am emotional,
I am raw,
I am hurting.
I am terrified.
Please pray.


P.S.  If you would like to support us on our journey to IVF, I have an online fundraising platform here & am constantly running different raffles with some amazing prizes sponsored by some very kind people!  We are also organising different fundraising events & are open to any more ideas that you may have.  Thank you xxx

Chronic vs. Acute

About 2 weeks ago I had a colleague say to me "Well, at least you don't have cancer.  It's not that bad."

Absolutely, I agree.  At least I don't have cancer, or diabetes, or Lupus, or migraines, or any other disease.  But I do have Myasthenia Gravis, & this is a chronic disease.

So what is an acute disease?  Acute conditions are severe & sudden in onset.  E.g. a broken bone or asthma.  A chronic disease means that it is a long-term disease that can be controlled but not cured. This means it will never go away.
I will fight this disease for the rest of my life.  Every day is a battle that most people have no idea about.  There are days when it would be so much easier to just stay cuddled up in bed & not push myself to get up & go to work with a smile plastered onto my face.  There are days where I am sick of pretending all is fine & just want to throw in the towel.  When people don't understand or say that MG isn't that bad, I wish I could let them live my life for one day so they could see the truth & see how well they would cope.  See if they would manage walking up stairs when you have to physically lift your leg for every step; or if they could cope with taking over an hour to eat to ensure you don't choke on any of the food in your mouth; or to make it through a day without slurring your words & battling to get out what you need to say.  Would those people truly cope?  Would they cope with their neck flopping forward unexpectedly because you have been bent over the computer for too long?  A chronic disease is a terrible thing to live with - no matter what it is.  And it makes it even harder when people haven't heard about it & thus don't understand.

People have heard of cancer, diabetes, migraines etc & they seem to be a lot more understanding & patient with people suffering those illnesses.  When they don't know what you are talking about, or don't understand the disease then they assume it can't be that bad.

Please, before you judge us snowflakes, read up more about this disease; try to put yourself in our shoes & think how well you would cope with your life if the MG was dictating every step of it; & allow us to have our down/negative days.  I try so hard to be positive, but sometimes it just overwhelms me & I have my "all-fall-down" days.  Please, love me through these times & don't just give up on me.  Know that I will come out of it & I will continue to fight my Myasthenia Gravis & to try be positive every day.  It is not easy.  I don't cancel plans for fun or to mess you around.  I don't not talk to you at the party because I am a snob, but rather because I am having a bad day & cannot physically get my words out.

Please do not give up on us!  Love us no matter what, & encourage us.  We didn't ask to get sick, it has made use lose a piece of our true selves, & it surprised us too!  Sorry for the moan, but I am hurting right now like you cannot believe & I am still in shock at the lack of empathy displayed by some people.  As we were taught at our church, "Love All.  Serve All."

Thank you xxx

Fighting a new battle...

This is something that has been consuming my thoughts lately, & is the reason I have been battling to write something new for my blog for so long...

To all those people that mean so much to both Warren & myself.

I am sorry that this is the way we are letting a lot of you know, but we would like to let those around us know what we are going through. 
As you all know, Warren & I cannot wait to be parents but due my MG, years of medication & my botch up of an operation 4 years ago (when I ended up with septicemia & in a medically induced coma) this is a struggle. I recently went to the gynae for a full check up. It was not good news.

Unfortunately I have more cysts, my tubes look like they may be blocked again, I have endometriosis, my cervix is at an angle & I have very few eggs left. All of this is working against us. Dr Amod has told us that there is no chance of us falling pregnant naturally & our only option is IVF. 
Now this is where another problem comes in... We are going to see the fertility doctor in Durban, & they have advised us that IVF starts from R45,000 - per time. There are no guarantees that this could take, so we don't know how many we will need to go for. This is why we are attempting to fundraise in every way possible. 
There is also another aspect working against us - my health. I need to go back onto another medication (CellCept) soon, but once I am on it then we cannot have kids. It causes major birth defects & we are not willing to take that risk. So, time is of the essence. 

Please, if you have any amazing fundraising ideas, or know who we could maybe contact, we would really appreciate it. Please understand that we are emotional currently. We are still trying to process all of this & it has hit both of us very hard. It is certainly not an easy thing to hear, so if we pull back from society for a bit it is because are trying to cope with this situation. 

We would really appreciate all of your prayers, love & support during this terrifying (but still exciting) time. Thank you xxx

Rare Disease Day

On Friday 27/02/2015 I was invited to give a talk about Rare Disease Day & specifically Myasthenia Gravis.  I was so excited to do this in order to create awareness.  Below please find my speech & slideshow for this presentation:

Good morning everyone & thank you for inviting me to come talk to you about Rare Disease Day, & specifically about my rare disease, Myasthenia Gravis.  This is something I am very passionate about & I am so excited to raise awareness about this subject which is so very close to my heart.

I have a short clip that has been used as an advert for rare disease day so please sit back & enjoy.

What is Rare Disease Day?

Rare Disease Day is an annual global event on the last day of February to focus attention on rare diseases as a public health concern. It aims to raise awareness among the general public, patients and their respective families, the medical fraternity, and decision-makers about rare diseases and their impact on patients’ lives.

One of the continuing themes is that everyone knows someone affected by a rare disease. And, even though each disease is rare, together they significantly impact the public as a whole. For that reason, rare diseases are an important public health concern.

Theme for 2015

This year’s theme, ‘Living with a Rare Disease’, pays homage to rare disease patients and their respective families and caregivers whose lives have been impacted by rare disorders. The campaign advocates solidarity and togetherness and encourages the community and broader public to partake in collective action and adopt a ‘Yes we can’ approach.  People with rare diseases need to know that they can be accepted by society, supported & their whole lives are not under dictatorship of their disease.

The complex nature of rare diseases, coupled with limited access to treatment & services, means that family members are often the primary source of solidarity, support & care for their loved ones.

This is also to pay tribute to the million & millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, & friends whose daily lives are impacted & who are living day-by-day, hand-in-hand with rare disease patients.

Jeans 4 Genes

Let’s join hands by participating in the “Jeans for Genes” project by purchasing a ribbon for only R10 which allows you to wear jeans today.  All funds raised from the sale of these ribbons go towards assisting rare disease patients to receive access to treatment & supportive care in South Africa.

You can also SMS ‘Rare’ to 38232 to donate money if you would like.

This initiative acknowledges the plight of rare disease patients and their respective families whose lives have been impacted by rare disorders and encourages the public to partake in collective action by purchasing and wearing a ribbon.

What is a Rare Disease?

A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population. Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear.

Rare diseases are present across the spectrum of medical conditions, & affect about 10% of the world’s population. All but a few types of cancer are rare. There are also rare neurological and neuromuscular diseases, metabolic diseases, chromosomal disorders, skin diseases, bone and skeletal disorders, and rare diseases affecting the heart, blood, lungs, kidneys, and other body organs and systems.

Typically these are chronic & debilitating & have enormous repercussions for the whole family.

Individually rare but collectively common, these are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them.

Living with a rare disease becomes a daily learning experience for patients & their families.  Though they have different names & symptoms, rare diseases impact the daily lives of patients & families in similar ways.

Who is affected?

Just some stats in regard to this:

It is estimated that 350 million people worldwide suffer from rare diseases.

80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear.

Approximately 50% of the people affected by rare diseases are children.

30% of children with rare disease will not live to see their 5th birthday.

Rare diseases are responsible for 35% of deaths in the first year of life.

Treatments

Many rare diseases still have no approved treatment. And many are not even being studied by medical researchers at this time as there are not enough people that suffer from these diseases. Increasingly, patients are experiencing reimbursement problems with insurance.

Medication needed & treatments that are available are usually extremely expensive.

Problems experienced by people with rare diseases

Difficulty in obtaining an accurate diagnosis.

Limited treatment options.

Difficulty finding physicians or treatment centres with experience in treating a particular rare disease.

Treatments are generally more expensive than those for common diseases.

Reimbursement issues related to private insurance, Medicare, and Medical aid.

Difficulty accessing medical, social, or financial services or assistance because those making the decisions are not familiar with the disease.  A lot of doctors do not know enough about rare diseases & contraindications involved & thus can prescribe something for e.g. flu that could prove fatal.

Feelings of isolation and of having been abandoned or “orphaned” by our healthcare system.

My Story

I have always been perfectly healthy, with no problems growing up.  I never had chicken pox, mumps or even flu.

When I was 15 I began to get weak & battled to swallow, smile, talk & eventually even get out of bed on my own.  I was taken to all different doctors who told me it was anorexia, then globus hystericus, then a dairy intolerance & finally I went to a neurologist who diagnosed me with Myasthenia Gravis.  At this stage I could only swallow a quarter of a jar of baby food daily, I slept majority of the day & couldn’t function normally.

I was hospitalised immediately for many different tests, scans & x-rays & had to take a whole year off school as I was in hospital so often.

And as you can see here, there is unfortunately no cure.  It can be controlled to a certain extent, but I will never be cured.

Myasthenia Gravis

Directly translated this means “grave muscles weakness”, although thanks to medical advances this is no longer as grave as it was in previous years!  It is a chronic neuromuscular autoimmune disease & pretty much means that the message between my nerves & muscles gets blocked by my own body so nerve transmission cannot take place.

This causes varying degrees of weakness of skeletal muscles, which increases after periods of activity & improves after periods of rest.  You can definitely see a difference at the end of the day compared to when I first wake up, with the muscles most affected being those that control eye & eyelid movement; facial expression; chewing; talking & swallowing.  It can also affect breathing, as well as neck & limb movement.

Facial Muscles

This slide is simply to show how my treatment can help me.  In the first picture you can see my smile is lopsided & my eyes are not open properly.

In the second picture this has improved after treatment, & in the third it is showing how I should look with my eyes fully open & my smile back to normal!

Plasmapheresis

This is my gummy berry juice!

They insert pipes just under my collar bone or into my neck that goes into my heart, & I am then connected to a “washing machine” whereby my blood is removed & spun around very fast to separate my plasma from my blood.  The antibodies that cause my MG are in my plasma so they dispose of my plasma, & then my blood is returned along with the replacement plasma.  I have to be in ICU throughout this treatment due to the high risks & the total cost is roughly R150,000 for 5 sessions.  

Surgical Procedures

2 months after I was diagnosed I underwent a Thymectomy whereby my thymus gland behind my sternum was removed.  This has been found to be linked to MG & often the antibodies are being produced here & these fortunate people can go into remission once they have had their thymus removed.

Surgery poses a huge risk for someone with MG due to your lowered immunity & there are huge anaesthetic risks.  Every time I have gone in for an operation I have been told there is a chance I may not wake up due to my muscles not being able to cope with being made weaker & put under.  I have ended up on a ventilator in a coma after once operation as I developed pneumonia & my body could not fight this.

Medication

These are some of the different options of medication that I have had.  They are all immune suppressants to try prevent my body from attacking itself.  Methotrexate is a type of chemo which I was on for 8 years, which of course has had long term effects on my body.

At one point I was taking close on 50 tablets a day, but luckily am down to only 16 currently which costs over R3,000 a month.

Conclusion

Thank you so much to each & every one of you for coming to listen to me today.  I really do appreciate your patience & time.  Please if you have any questions, feel free to ask & I shall answer to the best of my ability.

So please, if you have any questions of your own, please comment & I will get back to you as soon as I can!  Visit www.rarediseases.co.za for any further information - I have found them so helpful & understanding.  Definitely worth getting involved!