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Category: Treatments

Thirty, Flirty & Infertile

***WARNING – this post may be triggering to some***

I never thought this would be my life.

I never thought words like infertile, barren, sterile, IVF or failure would form part of my vocabulary when describing myself.

I have been wanting to write this blog for the longest time, but have never had the courage to put into words the journey that we have been on.  And then another Mother’s Day passes us by, and I lie crumpled on the floor as I hide away from social media and all the messages.  I try to put a smile on my face as yet another person asks if we have kids, and try not to fall into despair as yet another Facebook invite comes through for a baby shop.  I slowly inch my toe out to test the waters with regard to opening up about infertility, and the flood of messages from other women who are going through similar grievances causes my phone to “ping” for hours.

“The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friend, we have all manner of words and phrases, some helpful some not. Still we are conditioned to say something, even if it is only “I’m sorry for your loss.” But for an absence, for someone who was never there at all, we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?”
― Laura Bush, Spoken from the Heart


In 2004 I was diagnosed with a rare disease called Myasthenia Gravis.  This disrupts the message between my nerves and muscles, causing extreme weakness and exhaustion.  I have been on chronic medication since day one of my diagnosis, and the side effects of these years of medication caused havoc with my fertility.

I married my wonderful husband in October 2012.  From the moment we met, we both said just how much we wanted children. We are both very family orientated & knew we wanted mini-me‘s as soon as we were married.
I went off the pill as soon as we said “I do”, & we gave ourselves 6 months to try. Nothing happened, but we weren’t too concerned as we weren’t tracking my ovulation or anything – we were just enjoying being married & doing the baby-dance.
After a year of still no sign of falling pregnant, we decided to visit my gynae. She did scans & a few tests but still wasn’t overly concerned as we were both relatively young & still had time on our side. She did do some blood tests that showed I had very few eggs left, that are of a very poor quality. This was probably due to the fact that I was on chemotherapy -like tablets for 8 years for my disease, but we can’t be sure. It could also be from my septicemia I developed after a botched up operation in 2011.

***Note:  fertility treatments are not covered by medical aid***


Before deciding to visit a fertility specialist, I decided to try the natural route. Once a week I would go for acupuncture & got given Chinese & homeopathic medicine to take on a daily basis. This made me feel a lot better & regulated my periods, but still didn’t help me fall pregnant.

We went back to my gynae for another full check-up. I had bad ovarian cysts (I have had about 8 operations now to remove cysts – one of which was 10cm big), as well as endometriosis which had taken over. My blood tests showed further deterioration of my eggs & she advised our best option was to go to a fertility specialist & see if we need to try IUI or go straight for IVF. I had to have an operation to remove endometriosis & ovarian cysts, & while she was in there she discovered my right ovary & tube were completely destroyed & these had to be removed as well.

We decided to be open with the journey that we were on, as it was always so difficult when people asked us when we were going to have kids, or why we didn’t have kids yet. It certainly helped to have everyone’s support throughout everything, & it also stopped all the unnecessary questions at braai’s or family gatherings.  However, I also understand why people choose to keep this part of their lives quiet as it can be so difficult to openly discuss your latest hoo-hah appointment, or when your next period will start – and even more difficult to let everyone know when it didn’t work.

When we went to see the fertility specialist, he told us pretty much exactly what my gynae had said. Our only option was IVF & we didn’t have time to play around. The quality & quantity of my eggs was very concerning to him, as well as the rate at which I seemed to get ovarian cysts & endometriosis. He said if we waited for a couple of years I may not be able to have children, unless we got a donor egg (and maybe even a surrogate). I immediately went off a certain medication for my chronic illness that would make me a lot stronger, but causes major birth defects. He advised IVF would cost upwards of R65,000 due to the high doses of hormones I would need to be on, & they may need to do ICSI (where they inject the sperm directly into the egg) as well which would be an additional cost – even though there is nothing wrong with my husband’s sperm! (Note here:  they were called Olympic Swimmers!  In the infertility world, this is a HUGE win.)

We weren’t overly impressed with the bedside manner of this fertility specialist, & although I was getting sick of all the different people having to scan & test me, we decided to take one more chance with a new specialist. A family member had told us about Universitas Hospital in Bloemfontein where they had managed to fall pregnant & we decided to make the 12-hour round trip to Bloem to see if they had any further answers for us.


What a worthwhile journey! The doctors & nurses welcomed us with open arms, listened to us carefully & answered all our questions honestly. They held a conference amongst the doctors at the hospital to discuss our options with my Myasthenia Gravis & infertility issues, & then called us back in to discuss everything with us.
IVF was our only option due to time constraints & my health. We were very blessed as friends & family really rallied around us & helped with donations & fund-raising to help us reach our target to have IVF done; & we began the whole process in October 2015 (after having a HyCoSy to see if my remaining tube was open, or if another operation was needed – this was possibly the worst pain I had experienced up until this time, and Warren actually fainted seeing me in that much pain).

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What followed was weeks of daily injections (up to 4 a day), tablet swallowing, more trips to Bloem, scans & emotional stress. Eventually we got to the point where the doctors were happy with the size & number of my eggs on my ovary (we had 7!) & the following day I had my trigger shot. We then went back to Bloem to have the egg retrieval done. This wasn’t as bad as what I thought, although I saw the size of the needle before closing my eyes & that freaked me out a little!
3 days later we were told to go back to the hospital to have the embryo transfer done. Depending on the growth of the embryos, they will do this transfer between day 3 & day 5. It is preferable to do it on day 5 as then they are healthier & stronger, but mine weren’t growing quite as they hoped & they thought it better to transfer them into the safety of my womb sooner rather than later.
We had 3 little embybabies & we decided to have all 3 transferred as they weren’t particularly strong & we didn’t want to lose a chance of falling pregnant this time.

The 2ww was dreadful! Every day I wondered if my sore boobs were as a result of actually being pregnant, or the progesterone supplements I was having to use. Eventually we got to D-day & I did a pregnancy test at home before going in for my blood test. It was positive! I tried not to get my hopes up too high, as we had been told the medication could give a false positive on a urine test.
Luckily for us the blood test showed elevated Hcg levels – I was actually pregnant! We were completely over-the-moon & couldn’t resist telling everyone we knew that the IVF had worked & that I was pregnant. Maybe we were a little premature with telling people this, but everyone knew the journey we were on & had been such a support system for us from day one.

Our first scan showed the sac with a little yolk – one little embryo had stuck around & taken up residence in my womb. We started buying baby things & my mum blessed us with a cot. We were actually going to be parents & we couldn’t feel more lucky! I bought all the pregnancy & baby magazines possible & read up every day to check the growth of our baby. We chose names we both liked & started choosing ideas on how we would decorate the nursery.

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At our next scan (on my husband’s birthday), we were given some devastating news. The sac was empty. Our baby hadn’t grown & was no longer visible. He did both an internal & external scan; & unfortunately there was nothing there. He told us to go home & wait for a while to see if I miscarried naturally, or would need to go for a d&c in a week or so. Telling our friends & family was terrible. I still cry just thinking about it. Some people had no idea what to say, & have avoided us completely since then. Others sent messages almost every day asking how we are & just letting us know they are here for us & are praying.

The first Wednesday, 06 January, of 2016 I woke up to go get something to drink, & as I got to the kitchen, I could feel blood pouring down my legs. I had miscarried. I had lost our little bean that we had been wishing & praying for. I screamed for my husband who put me into the shower & cleaned everything up. We phoned my gynae who advised us to go to the hospital. I was admitted straight away & tests etc were done to confirm there was no more baby. I was taken into theatre at midday to have a d&c, whereafter I was admitted into High Care due to excessive blood loss & my Myasthenia Gravis. My gynae was amazing & so comforting throughout this experience. She cried with us, loved us & told us to never lose hope.

I know this has been long, but I ask you to stay with me for a little while more…

“I became the person people don’t want to tell they’re pregnant. I hate that. A friend told me her happy, fantastic news, and just a second later she burst out crying, afraid for how this would make me feel. I hate that. I work really hard to arrange my face in such a way that approximates uncomplicated glee. And I am happy for them, or course. But sometimes just after the happiness is the desperation. Some days are easier than others.”
― Shauna Niequist, Bread and Wine: A Love Letter to Life Around the Table with Recipes


We tried one more round of IVF.

I had to have more medication, and we became pro’s at injecting my stomach wherever we were – in fact we sometimes had to pull over on the side of the road for husband to inject me.  Those suckers burnt, but they had to be done at precise times of the day.  We took every precaution possible, and decided to keep this round quiet – except for telling our immediate family.

The retrieval went well, and the transfer even better.  The doctors were feeling positive about the quality of my eggs, and we were sure this was it.

It wasn’t.

The eggs didn’t implant.

I wasn’t pregnant.

I was broken, and this nearly destroyed our marriage due to all the stress and emotions we were trying to work through as individuals, never mind as a couple.


We didn’t lose hope, and still thought that one day we would get our miracle.

And then, my stem cell transplant happened.  We were warned that the drugs would do crazy things to my body, and we weren’t really sure of what exactly could happen besides the loss of hair.

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And then, we had to wrap our heads around the reality that I was now in early menopause.  There would be no more chances at having children.  My body had officially given up.  Guys, I was just over 30 and I was in the thick of menopause – the sweats, the emotional rollercoaster, the lack of periods, the feeling of officially being a failure.

So, now you may be asking what this all means for us.

South Africa has made their adoption laws super strict, and the use of a surrogate requires a High Court interdict to prove that the mother cannot carry the baby herself.  There is no easy way through this.

We are forever grateful for our friends and family who have granted us the honour of being godparents and adoptive aunty/uncle, and we love our fur-children with all our hearts.  But deep down I will always feel like I have failed as a woman; failed as a wife; failed as a mother; simply FAILED.

Infertility is awful.

“On a planet where for thousands of years, even today, a woman’s worth has been judged exclusively by the productivity of her womb, what the hell is the point of a barren woman?”
― Elissa Stein and Susan Kim

If you are going through this currently – I am so f*cking sorry.  It sucks balls.  There is no pleasant/lady-like way to say it.  Cry, scream, laugh, celebrate, mourn – every day is an unknown.  And every emotion will be experienced – raw.

And if you have made it all the way to the end of this blog, thank you for taking the time to read my story.  Thank you for learning about our baby bean, and for allowing me to remember him/her with all the love in the world.

We miss you.  We mourn you.  We will never forget you,

Mum & Dad xxx


 

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Michelle Funke Coaching

Michelle is one of the most amazing people I have ever met. She is so kind, and after only one session with her I felt like I had huge breakthroughs in my life.

I have had life and business coaching before, but still didn’t really understand the full benefits of it. That was until I had my coaching session with Michelle. We chatted through my imposter syndrome and people pleasing, and then chatted through some major events in my life. We discovered where a lot of my self-doubt and lack of self-belief has come from, and despite all the tears that I shed, I left feeling so much lighter and happier. I couldn’t believe how she managed to help relieve so much stress in only an hour, and the fact that we were able to connect through a Whatsapp video call made it so easy to chat.

I didn’t feel any judgement or pain from Michelle, and immediately felt like I was talking to a friend. We laughed, cried, and released negative emotions in a relatively short amount of time. I was given some homework (eeek!) and this was really put out there to encourage a mind shift towards learning to love myself, and actually appreciate the person that I am.

My sister also had a session with Michelle, and felt the same feelings as me.  Michelle is like no other, and I am so honoured to be able to include her in my blog feature as I really think she can help so many people through their emotions, self-empowerment and trauma recovery.


Your name: Michelle Suzanne Funke

Your business name: Michelle Funke Coaching

Social media handles: Website, LinkedIn & Facebook

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Tell me a bit more about what you do: I am a trauma recovery and authentic self empowerment coach. I work with people who feel that they are falling short of how they want to show up in their life. They are unsure of how or where to make the changes needed so that they can live a life they love. They want to figure out what is holding them back and what action steps to take to get them to where they want to be. I help them to gain clarity and forge a way forward that feels authentic and right for them.

I have a special interest in trauma recovery and help people to work through traumatic experiences. A traumatic event is often life-changing and leaves people feeling vulnerable and out of control. They are looking to recover some sense of normality within themselves and their lives. I help them to tap into their courage to reclaim their power, discover their new normal and move forward with a sense of peace and hope for the future.

How did you get into this industry: It really comes down to one moment for me. My fiancé died in a car accident when I was 21, and the chaplain at the police station gave me this amazing hug. I can’t remember what he said to me, but I can still to this day remember that hug. I wanted to pay that forward and so I started to study a degree in psychology and also became involved in the Douglasdale Trauma Support Unit to help others who had been through a trauma.

When I was in my late 30’s, I had a crisis moment. I was burnt out, stressed and felt like what I was doing wasn’t worth it. As I was no longer involved with trauma counselling, I felt unfulfilled because I wasn’t helping people, and that is what I am so passionate about. So after lots of thought and careful consideration I decided to change careers. I enrolled in a coaching certification course and here I am, doing what I love and what I know I am meant to do.

Why do you have this passion for helping people: There are so many people who feel stuck in a rut, like they have no options or who don’t know how to get what they want for themselves in life. People don’t have to be stuck or frustrated, unsatisfied or unfulfilled. I love helping people gain perspective and clarity on what it is they really want for themselves, and helping them to create an action plan so that they can go out and get it! This can be anything from self confidence to a new business venture.
But mostly, it breaks my heart to see how many people have been affected by a traumatic event, especially crime related incidents in this country and how it impacts on their daily lives. My own journey through traumatic grief with the loss of my fiancé and in more recent years the loss of my infant son, has made trauma recovery coaching my biggest passion. People are amazingly resilient and they can come through the darkest of times when they have a safe space to share their story, are equipped with healthy coping mechanisms and reconnection with their inner courage and strength.

Why do you think coaching is so important: Coaching is important because everyone deserves to feel good about themselves. Everyone has at least one aspect of their life that they are not happy with; be it financial, career, relationship, self image….a habit they want to break, certain behaviour they don’t like and want to change … a traumatic event they would like to move past……the list goes on. That thing they are not happy with can be changed. Life will never be perfect, but it can be perfect for you, and that is what coaching aims to achieve – helping you to work on the aspects of your life you would like to improve so that you can be happier, more fulfilled and have a deeper understanding of yourself. We are complex beings with endless opportunity for personal learning, growth and development, and it seems a shame not to tap into that potential.

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How do people book an appointment with you: They can send me a mail at mich@michellefunkecoaching.com or WhatsApp on 082 922 6396

Do clients need to travel to you for their session: I have a home-based coaching room in Fourways for those who would like face-to-face sessions, but I also offer sessions over WhatsApp video call, Skype or Zoom.

Quote you live by: “Do what’s good for you, or you’re not good for anybody” – Billy Joel. This has always resonated with me even though it sounds selfish, because honestly, if you don’t look after yourself, you can’t be caring, kind, compassionate or helpful to anyone else. Self-care is not a nice to have, its essential in my opinion.

Anything else you want to add: We get one life. Its easy to get caught up in day to day life, and before we realise it we are not even really living, just existing. Chasing the next deadline, pay cheque or goal. I would love more people to realise that they can thrive instead 🙂 !


Isn’t she just wonderful?

With all the fear and concern surrounding the coronavirus and threat of a lockdown, Michelle is someone that I would really recommend to talk through these emotions. And the fact that you can do this from the safety of your own house makes it even more appealing.

Here is a short clip she recently posted on her social media, and it provided me with such clarity and love. I hope it can help you too…


 

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Hospital Spoils

I have been admitted into hospital over 100 times – easily.  The first year of my diagnosis saw me spending more time in hospital than I did at home.  I have had over 20 operations (I can’t remember the exact number & to be honest can’t even remember all the operations – I try to block these from my memory once they are over).  This means a LOT of time spent lying in a hospital bed.  It means sore muscles, hairy legs, uncomfortable beds, greasy hair, being run-down & generally just feeling rotten.

It means long days of doing nothing, & not wanting to actually watch one more TV show that is on repeat.  I often beg my husband to just rub my feet as I crave human touch & my feet ACHE from not being used.  So when I saw a new business here in Joburg North being advertised, I was super excited.

Hospital Spoils is a relatively new business that will come to you in hospital, or whilst you are recovering at home.  In fact, they even came to my office in Broadacres to pamper me there.

They reached out to me to offer me a treatment of my choice (of course I went for a shoulder, neck & head massage!) & I knew that my fellow rare warrior friends & hospital frequent-ers would be super excited about this idea.


Your name:  Dr Claire Mitchell – Specialist General Surgeon and CEO & Sarah Saffy – Managing Director

Business name:  Hospital Spoils

Social media handles:  WebsiteFacebookInstagram

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Tell me a bit more about your business:  Hospital Spoils is a specialised mobile spa with medically trained therapists that offer manicures, pedicures, massages and hair wash and blow – dry’s right at your bedside. Started by a Specialist Surgeon, servicing hospitals, clinics, retirement and private homes in the north of JHB and surrounding areas. Perfect for people in hospital or at home – new mom’s, post op, elderly, unwell and those who are house bound.

Where did the idea for this come from:

 

What area do you work in:  Hospitals, retirement villages, old age homes, rehab facilities and private homes in Joburg North.

How can people book you to come to them:  Call or WhatsApp 083 778 4741

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Are your therapists trained beauty therapists:  Yes and hair stylists!

See full pricelist here:  HS Digital Leaflet Insert 2

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I was so impressed with the level of hygiene & care that was taken throughout my treatment.  And you can tell that the therapists really care about what they are doing – it is so much more than a job for them.  They really want to help you feel better about yourself, & take away some of the stress that you have been experiencing.

My favourite part was that I was constantly kept informed via Whatsapp on what was on offer, who my therapist would be, confirmation of my appointment, an invoice, & then I was sent a message following my treatment to rate how it went & if they can improve in any way.  Customer service is of the utmost importance – especially in this area & when you are dealing with people who are either sick or recovering from some downtime.

I can absolutely say, without any hesitation, that I recommend Hospital Spoils for anyone & everyone.  And I know who my first call during my next hospital admission will be to!

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To the woman at the Gym

About 2 months ago I plucked up the courage to join a gym.

I haven’t exercised in over 15 years, & my body has taken huge strain.  Having Myasthenia Gravis meant that I couldn’t exercise, as stimulation of the muscles meant that they were weaker overall & it could even affect my lungs & breathing.  Well-meaning people would say I need to get fitter, or lift weights in order to try strengthen my muscles, but it just isn’t possible with MG.  It is a very frustrating situation to be in, as we all know the importance of exercise as well as the associated endorphins.

But now, with my second chance at life causing me to jump out of bed every morning & be excited to see what I can do today, I knew that I needed to lose weight in a healthy manner & start caring for my body the way it deserves.

Starting at a gym terrified me.  There are super fit people there & I was so nervous that I would be judged for the way I look, my inabilities & just because I am the newbie.  But I put on my big girl panties & headed to Virgin Active Cedar Square – it is close to both home & work, & I immediately got a good vibe from the staff when I walked in.  They were welcoming, kind & made me feel so comfortable.

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I had no idea what to do on any of the machines, so decided to ease into this journey by trying out some classes.  There were so many to choose from – dancing, boxing, yoga, pilates, The Grid, spinning…  How would I know what I would actually like?  And would I stand out like a sore thumb in the class?

First up was boxing…  Oh boy!  I huffed, puffed, groaned, grunted, sweated & wanted to cry – that was just trying to fit into my tights in order to get to gym.  I didn’t have proper takkies, & had to wear a t-shirt I had been sleeping is as I literally had no active wear.  I didn’t want to spend unnecessary money if I didn’t enjoy this fitness journey, plus my goal is to lose weight so I didn’t think it was worth buying clothes that would (hopefully) be too big for me.

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Arriving at the gym, I swiped my card & made my way to the room in which the class was to be held.  There were a few other women there & I looked around nervously.  Not one of them greeted me.  They acted like I didn’t exist.  Running around the room as part of the warm-up, I had to keep taking breaks & sips of my water.  I explained to the instructor that I was very unfit & hadn’t exercised in some time – he was so understanding & spent extra time helping me with every exercise to ensure I was doing it correctly to prevent further injury.  But I was put off by the eye-rolling & judgement coming from some of the women in the class.  They made me feel self-conscious & embarrassed.  I couldn’t wait for the class to be over & ran out at the end before jumping into my car & letting a few tears escape down my cheek. What was I doing?  I wasn’t ready for this.


The following week I decided to try dance class.  I had done competitive dance before I was diagnosed, & had always enjoyed moving to music – it brought me so much happiness & transported me to a better place.

As I walked into the room, I saw the same woman that had been at boxing.  My heart sank.  But she ignored me & acted like she hadn’t seen me.  Perhaps she didn’t remember how terrible I was, or maybe she was just so caught up in her own world?

Dance class was everything I could possibly dream of & more.  The instructor was so full of life & made me feel so welcome.  She was beautiful inside & out, & didn’t pick me out in front of the others for not knowing the movements.  She laughed & I left feeling on top of the world.

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This first class was over 2 months ago, & I have been going on a weekly basis.  It is my pure escape & something that I look forward to every week.  I love the feel-good vibes.  I am still catching up to the others that have been going for ages, but when I look back on the fact that I was walking with a cane this time last year I am FLIPPING PROUD.

But this woman & her cronies…  Gosh.  She is literally destroying my enjoyment & happiness, & I even skipped dance class this week as I couldn’t handle having to deal with her.  I feel like I am back at high school, & there are the “cool kids” in the corner of the class room who are judging me.  I feel like I will never fit in, or really be good enough.  I hide away in the corner, & always stand at the back of the class so nobody will see me.  The enjoyment of the class is totally destroyed by the fact that I feel like I don’t fit in & that they are judging me.


This past weekend I took my sister to gym with me as they had an open weekend.  She commented on how friendly all the staff were, & we both love the fact that they know me by name & make everyone feel so welcome.

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And then, can you believe it, THE woman came to the same class I had signed my sister & I up for.  Now, I am not your usual lady at the gym.  I still don’t have much hair.  I wear crazy tights.  I laugh out loud when I can’t do something.  But yet this one still acts like she has never seen me.  I was standing at the entrance when she walked in, & offered a nervous smile.  She looked at me & immediately looked away – pretending she had never seen me.  Weird right?

Then helping the instructor set up the equipment for the class, we were standing next to each other.  I thought I would try again – my mum has instilled good manners in me & has always encouraged me to be friendly.  I greeted her.  She looked at me like I was poop on her shoes & walked away.  My sister noticed this interaction & reminded me to be the bigger person.  I think if she hadn’t been there with me I would have immediately walked out & probably shed a few tears on the way.


It took a lot of guts to join a gym.  I know I am overweight.  I know I am unfit.  I know that there is a LOT of stuff that I cannot do.  I don’t have a workout buddy that I can go to gym with, & have had to step out of my shell to make friends at the gym.

There are some wonderful ladies at the gym that greet, encourage & support one another – but there seems to be this nasty little clique that cuts through to your core & reminds you that you will never really be good enough.

I don’t know if I will go back to dance class.  It really upsets me, but I just can’t deal with being made to feel small, insignificant & not good enough by other women who are there.  I am better than I was this time last week – better than this time last month – & a whole new person compared to who I was this time last year.  But I will still never measure up to anything compared to the “cool kids”.

My personal trainer, Zander, is one in a million & really encourages me on a daily basis.  He shows me I can be strong.  He shows me I can be a fighter.  But then I walk into a class with the mean girls & I lose all of that.  I lose myself.  I become that little nerd from school who didn’t fit in & my insecurities are front & centre.


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I just want to remind everyone that you have no idea of the battle that people are fighting.  You don’t know what is going on at home.  You don’t know what medication they are on that has caused them to gain weight.  You don’t know if they had an accident & haven’t been able to exercise in some time.  You don’t know what they are feeling.  You don’t know if your smile could brighten their day.  You don’t know if your snotty, judgmental look could completely ruin it.

It costs you nothing to be kind.  It takes nothing to be kind & welcoming.  But it can be the turning point in someone’s life.

So if you are this woman, please #ChooseKind.  Please don’t make others feel like they will never measure up to you.  Please just smile at me & others like me.  At the end of the day we are all people & we deserve mutual respect & love.

Peace x


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Stem Cell Transplant (Part 1)

This has been extremely difficult to write.  I have had to relive the most trying time of my life.  I have cried, laughed, & tried very hard to forget certain aspects of my stem cell transplant.  Going into it we knew there was a 55% chance that I wouldn’t make it – I would either be cured, or I would die.  Flip.  Seeing that in writing in front of me right now gives me goosebumps.  I don’t think you can ever explain that kind of fear to someone unless they experience it themselves.  We knew we had to do it, & I have always been so open about my journey to get to this point.  Looking back, I don’t think I would have the strength to go through this process again.  There were times during it that I was wishing I could rather be taken than have to endure more pain, exhaustion & the nausea.  I had no idea just how difficult it would be, & I would never advice that someone go into an experience like this willy-nilly.  I am forever grateful for my doctor, family & friends who sent me messages of encouragement throughout & wouldn’t let me simply give up.

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I went to see my doctor at the beginning of the year & we discussed all the nitty gritty.  She made it clear about the high risk we were taking. & everything that could happen.  She made sure that this is what we wanted to do, & that she would do her absolute best to manage everything as best she could.  She was positive about this, but knew that we had to know all the potential positives & negatives.  I was sent home to make an appointment with a dentist to ensure that I had no infection of any kind, as this would hinder my progress with my transplant & could spread throughout my body.  I was also started on Neupogen injections twice daily, which husband had to give me.  Luckily all my tests came back clear & I could then be admitted into hospital to begin the journey to my new life…

I was admitted into Olivedale Hospital & we managed to access my port for the very first time.  My veins are TERRIBLE & this is a source of great anxiety for me, as they often have to poke me several times in order to get a line up or even draw blood.  I know that I often psych myself up about this, so I was so grateful when the pushed the needle into my port & all was good.Photo 2019-01-16 at 18.14.01

I then began the process of having my stem cells retrieved.  This was really not painful, & was simply like giving blood.  The idea of it was a whole lot worse than the actual fact.  I had the friendliest man from SANBS with me & performing the retrieval.  We were hoping to get enough cells after only one day, but unfortunately only ended up with 1,7 million & we needed double that.  So I had this over 2 days, & this magic unicorn blood was then packaged safely & sent off to be stored for the transplant.

I then had only 2 days of plasmapheresis (my usual treatment that I have been going for on a monthly basis for the past almost 3 years) & got to go home before chemo started.  Unfortunately the constant blood tests also showed that I am anaemic, so this meant an iron drip & becoming more aware of the stress that was being put on my body from the external factors.  However, I was so excited to get back to my babies & have some quality time with them before all the real trials started.  I decided to take this weekend to spend outside, appreciate my life & just meditate on what was going to happen.  I needed the time & space to just breathe…


And then began the chemo…

I was admitted back into hospital where I would be on continuous chemotherapy for 5 days.  They had to do a test patch of the one medication (ATGAM) that they would be using alongside the chemo, & I reacted to it.  This delayed everything, but I convinced them it was largely due to my extremely pale; never-see-the-sun skin.  They gave me phenergan to help with the reaction & it pretty much knocked me out!

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On Tuesday 22 January 2019 I began my very first infusion of chemotherapy & ATGAM.  I had bruises on my tummy from the test patches, but seemed to cope with the actual medication being infused through my port.  The first side effect we did see was extreme swelling of my face & I felt like I had been sleeping on a feather pillow for days so I was all puffy.  It was dreadful at the time, but I can definitely look back & laugh at this now!

By the following day my swelling had gone down (they gave me medication to make me wee lots so I was running to the loo all day!) but the nausea & vomiting had already begun…  I was trying to sleep as much as possible in between all of this & still get some nutrition in.  I was sucking on ice cubes, & then my husband came to visit me (he had been away for work up until now) so that made my heart a whole lot happier.

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I got moved into a room on my own at this point as my blood cell count was dropping, & I had to receive 2 bags of blood.  I actually managed to eat something & it stayed down which was a huge relief – they increased my anti-nausea & really were trying everything to help improve my state of mind.  I began to have terrible nightmares & oftentimes woke myself up screaming – the nurses also came in & woke me up as they could hear me shouting for help.  This is apparently a common side effect of chemotherapy & one I never wish to relive.

On the 25 January I really began to question whether I was doing the right thing.  I was miserable, exhausted, nauseous & they had to replace the port needle as the one I had in since my admission had blocked.  I had both vomiting & diarrhea & just didn’t know what to do with myself.  I was exhausted, tearful & didn’t even have the energy to read messages on my phone, let alone reply to anyone.  I had no idea the emotional strain this would have on me & I begged my doctor to just let me go home.  I didn’t think I could carry on.  My doctor said this would probably be my lowest day, but she gave me more anti-nausea & all sorts of other medication, as well as went to buy me some ginger biscuits to try get some food into me so I could take my meds.  I couldn’t even keep water down, & it took almost 2 hours to finish 1 biscuit, but it was a step in the right direction.  Plus husband came to see me again so…

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28 January 2019 – as well as being my sister’s birthday (sorry for trying to steal the attention again!); this is now my second birthday!  The transplant was a simple affair.  I was moved to the brand new transplant ward & received the first ever stem cell transplant for Myasthenia Gravis in South Africa!  All the anticipation & concern, & it turned out to be such a simple procedure.  The nurses were lovely & so patient with me.  I chuckled when all 3 doctors arrived in full gown, mask, & isolation set-up.  They said they felt like they were from Star Wars, & would NOT allow me to take a picture of them.  The giggles helped me a lot though & we all celebrated as the magical unicorn blood aka my stem cells began to drip into my body.  This was real.  This was actually happening!

And then, I could go HOME!  Home to my husband, my fur-babies & I knew my mum would be arriving soon to help take care of me whilst my husband went away for work.  I had been warned that I had to be very careful around people, & my husband had to sleep in the spare room to ensure I didn’t get sick.  My dogs were not allowed to lick me & I carried hand sanitizer with me everywhere I went – there was a bottle in the kitchen, next to my bed, in the lounge, in my handbag & medical grade handwash in the bathroom.  I was determined I was going to make it through this time with no complications.


 

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Rare Disease Day 2019

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Being a #RareWarrior means that today is one of the most important days of the year.  As you can tell by the title, it is International Rare Disease Awareness Day.  Being part of Rare Diseases SA means that I get to see behind-the-scenes & I am constantly in awe of just how much this organisation does.  When you mention that you have a particular rare disease, or are trying to raise awareness for one, people often look at you with total confusion & have no idea what you are talking about.  We need to work together to raise awareness & show that we are #AwareAboutRare & #Care4Rare.

According to the Rare Disease Day website, Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some poinRare Disease Dayt in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

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I was diagnosed with Myasthenia Gravis when I was 15.  Before this I was a perfectly healthy child, & never even had flu, chicken pox or any of the other ‘normal’ childhood ailments.  I had never been in hospital besides the day I was born & didn’t truly understand what it was like to be sick or to have to fight every day.  I didn’t know anyone with a rare disease & I was stuck inside my happy little bubble.  I will be the first to admit that I was self-absorbed & didn’t understand people who were ‘sick’.

Why should I try create awareness for something that doesn’t affect me directly?  Because if we don’t all work together to create awareness, then we will forever be stuck in a rut & people with a rare condition will be continue to feel alone & unsupported.  It is so difficult trying to explain to people that you have a Rare Disease & they either just don’t care, or don’t seem to want to know more or show their support.

So please, rock your #Jeans4Genes, buy a sticker, & talk to others about what Rare Diseases are.  Like the RDSA Facebook page & share their posts.   When you read an article or post about a rare condition; read up more & share this on your page so you are teaching more people.  I can’t tell you how much we appreciate this.  It makes us feel like we aren’t alone, & like we are loved.

Thank you everyone for being there for me through this journey & for loving all the Rare Warriors around the world.  You are fabulous!

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Today is the day! Let’s seize this opportunity to create as much awareness for #rarediseases as possible.

There are many ways you can make it count:
1. Wear your jeans and RDD2019 ribbon
2. Attend an event in your area
3. Post your face paint selfie on social media and hashtag #RDD2019 #ShowYourRare
4. Share your story with others
5. Know the facts…and share them! http://bit.ly/WatchTheRealityOfRareDiseases

#BePartOfTheMovement #bethechange #Jeans4Genes

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Catch Up Time

It has been a while since I have written a blog.  There seems to have been so much going on & at long last I am able to sit back on the couch & not immediately pass out from absolute exhaustion.  I thought it was time to write a little catch up on everything that has happened…


We reached the target needed for the stem cell transplant!  This still feels like an absolute dream & I have been blown away by everyone’s generosity.  This is my last shot at “normality” & I didn’t know if I would ever get the opportunity.  It seemed like such a far away dream & something that would remain that – simply a dream.  My family, friends, & strangers that shared my pleas; organised fundraisers; sent messages of encouragement & helped financially – you have all contributed towards saving my life & for this I will always be grateful.  How do I even begin to thank you for putting my Christmas Wish at the top of your list?  My heart is so full & I can only pray that your kindness will be returned to you ten-fold.

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We had a great fundraising event at Jynx Nightclub in Lonehill called The Snow Ball, & it was a great night filled with laughter until my cheeks hurt; dancing until we fell over our own feet; & many, many snowflakes.  We were celebrating a life; we were celebrating a second chance; & we were celebrating the support that has been shown by a community of wonderful people.


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Now, a bit more about my transplant.  This is why I have been quiet & simply trying to process what is going to be happening.  This transplant is my chance at “normality” once again, but it also comes with its risks.  We went to see my doctor & she drilled this into us.  We need to be aware of the complications & high chance of infection.  Out of the 20 people that have had this worldwide, 9 have survived.  This is 45%.  The other 11 didn’t make it due to infection & their body simply not coping with what has happened.  This absolutely terrifies me & is a reality that I may be facing.

I will be admitted early in January 2019 for plasmapheresis – we are thinking we will do about 5 rounds to try get me in fighting shape for what is to come.  We are very lucky as I am having this in the hospital that is literally around the corner from me so I can see my family & friends during this hospital stay.

Once this is done, I will start on injections to help release my stem cells into my blood.  These will then be taken out & put away safely for when they will be transplanted back in.  This is not a painful process – much like giving blood – so I am not concerned about this!

Then begins the tough part.  We need to do a hard reset of my body – press CTRL ALT & DELETE to restore the antibodies to factory settings & hopefully get my body to function as it should.  This involves chemotherapy (yes, like what they use with cancer patients) & admission into isolation.  This will destroy my immune system & means that there is a high chance of me picking up any goggas floating around.  I need to be careful for 3 months following this & wear my mask if I leave the house – which I have been advised not to do for at least a month following my final chemo treatment.

Once the chemo is over, then the actual transplant happens.  We use my own stem cells (that have been “cleaned”) & these are put back into my body just like they would when you are receiving blood.  It sounds pretty simple doesn’t it?

Because this is the first time it is being done in SA for Myasthenia Gravis, there is a lot of research & back & forth to ensure that I will be getting the best possible care & medication.  My team of doctors are one in a million & I know that this would not be possible without them.

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So, this is what is happening.  I have come to spend Christmas with my family so I can see them all & pour love out over all of them.  I have accepted that this could be my last one, although am hoping against all hope that it isn’t.  I have dreams, hopes & aspirations.  I have so much to be grateful for & know that I could never ever ask for a better family – & extended family that I have simply forced my way into their lives.  I live a life of happiness, acceptance & growth; & have truly realised that life is a gift that you need to appreciate every day.


Thank you for reading this, crying with me, & laughing with me.  Thank you for encouraging me, supporting me & just being there for me & my family.  Thank you for being part of the #SaveMegs movement & helping my Christmas Wish become a reality.  2019 is going to be a year of miracles & happiness!

If you would like to read more, my fundraiser is here.  I won’t be able to work for up to 6 months following the treatment due to recovery, & thus financial stress is a definite reality.

Have a very Merry Christmas, appreciate the time with your loved ones & travel safely wherever you are.  Sending so much love x


 

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