Category: Treatments

15 Things Not to Say to Someone With Myasthenia Gravis

I wrote this blog a few years back and thought it was still pretty relevant…  Even though I am nowhere near as sick with Myasthenia Gravis as I was when I wrote these, there are still certain triggers for me that cause heartache! I have heard all of these at least once and they have really stung. Some of them I am learning to brush off, but some still make my blood boil. So this is my vent. It is often my responses I wish I had the guts to say to those who have said it to me.

People may think they are being kind or supportive, but know that more often than not we are sensitive and embarrassed by our myasthenia gravis. Words can be very hurtful, and stay within someone’s heart for a lot longer than you may realize.

We are all beautiful individuals — some of us are just more “special” than others!

So here it goes…

1. I know exactly what you’re going through.

No, I can pretty much guarantee that you don’t. You don’t know what it’s like to battle to get your words out, choke on your own spit or have difficulty getting up off the floor. You may have some understanding through us explaining what we are going through, but you do not know what it is like to live with MG. And everyone who has MG is different, and has varying degrees of symptoms — nobody is the same, so we don’t even know what the other snowflakes are feeling!

2. Nobody could ever love you with this disease.

Yes, I have actually had an ex say this to me. It broke me. Still to this day it lies heavy on my heart, and every fight I ever have comes back to these words that were spoken over my life. I often distance myself from others as I would rather not become too close to anyone than lose them (friendship or otherwise) due to the fact that they cannot handle my disease. It is a heavy burden to carry, and try as I might I cannot forget it. Even if you say something like this in the heat of the moment it cannot be taken back. I am so grateful for my wonderful husband, family and friends that have proven that they can love me with my MG and will be my pillars of support through the good and the bad. I am truly blessed.

3. You need to be more positive.

This one irks me like you cannot believe! I am a very positive person. I laugh throughout life and always try to see the best in every situation. Yes I was given the short straw with regard to this illness, but if I hadn’t gone through everything I have, I wouldn’t be the person I am today. But sometimes I do have my down days. Sometimes I will cry for anything. Some days I am sick of being sick. I battle with hearing bad news about my illness or my medicine. But I don’t need to hear that I need to be more positive. I try every day to see the good in every situation I find myself in. I try to greet others with a smile, make them laugh and show compassion towards everyone I meet. I try to live my life with kindness in my heart. I would love the same in return! Help lift me up when I am down. Make me laugh. But please don’t tell me to be more positive!

4. It’s not that bad.

Um…  Sometimes it is! Have you lived with this? Have you wondered when things will get better? Have you thought you were in remission, only to end up back in ICU? Have you sat on your bed unable to stand up or brush your hair or pick up your bag? I agree that some days are absolutely fantastic, but when I say I am having a bad day this is probably because it is quite awful! Many of us snowflakes keep smiling and positive for as long as we possibly can, and we are probably dealing with a lot more than you possibly realize. We live with this every day. We try cope with it to the best of our abilities. We don’t use it to our advantage or enjoy being sick.

5. You need to get over this.

I would love to! I would love to not have to put 22 tablets down my throat daily. I would love to be able to walk up stairs without having to physically lifting my legs by the time I get to the top. I would love to not slur my words by the end of the day and have people say to me, “Shame, are you tired?” We do not put this on! And we would love to be “normal” like everyone around us.

6. You don’t look that sick.

No, probably not. Except for maybe if you see us late at night or if we are really tired, and our eyelids start drooping or we can’t smile properly. But MG is a nasty disease that drains all our energy and makes our muscles forget their job. We may not look sick, but we are fighting a constant battle with our own bodies.

7. Just drink water/eat yogurt if you are battling.

Shame. The people who have said this to me have really just been trying to help. They most probably did have my best interests at heart but just did not understand. When you cannot swallow, it means you can’t swallow anything — sometimes not even your own spit. I can count many a time where I had to use paper towel/toilet paper to soak up my saliva as I kept choking on it and it was dribbling out onto my chin. So drinking water or eating yogurt is not going to help the situation — I would probably need more paper towel to clean up the mess if anything! When I am having a good day this is perfectly fine, but when I am battling this is near impossible…

8. You need to get out more.

Walking makes me tired. Working makes me tired. Talking makes me tired. Flip sometimes even putting on a happy face makes me tired! So when I am feeling weak, the only thing I want to do is climb into my bed and sleep. I wish I could go out more. I wish I could spend more time with my friends and enjoy parties with them. I thrive off other people and their energy. It hurts when people say this to me, as I used to be very outgoing and a real party animal. Now staying up after 10 at home is a big thing! I often have to cancel/postpone plans as I realize my body just can’t cope and I cannot take the risk of having another relapse. On my good days I do as much as I can without overexerting myself (my mother may disagree here…) and I always go to bed much happier. I will come out whenever I can.  But please understand that my health is my number one priority and canceling plans hurts me a lot more than it hurts you. Please don’t exclude me from everything, though — I do feel like I have missed out on a lot with friends due to my MG and this hurts. Perhaps make plans for during the day over a weekend, or on a public holiday.  If I can’t make it at the last minute, be understanding. Don’t fight with me about it!

9. It must be nice to sleep so much and have everyone run around after you.

I have had plenty of people say this to me. Even some of my own family… I think some people take advantage of being sick, that is true. But I hate it. I hate that my husband has to carry in the groceries for me. I hate that I can’t help move the furniture around at work or home. I hate that often over a weekend I have to take an afternoon nap to see me through the day. I feel like I am missing out! I hate having to ask people for help, or even to admit that I cannot do something on my own. It makes me feel inferior and makes me have to acknowledge my illness. I wouldn’t sleep so much if I didn’t have to, and I would do everything for myself if I could.

10. If you exercised more, you’d get fitter and feel better.

Overuse of muscles in a person with MG makes them give up. So in other words, exercise actually makes us weaker! We can do basic exercises, but only when we are feeling strong and can cope with it. Sometimes walking from the house to the car is enough. I have tried to go to a gym class once before and fell on the ground unable to get up. My muscles had had enough and I struggled for ages afterwards with weakness all over my body.

11. Everyone gets tired.

Yes, everyone does get tired. But tired for you is very different to tired for me. We all cope in varying ways. Myasthenics get tired from a normal day at the office! Realize what it is that our illness does to us before you say such things.

12. You’re just having a bad day.

Hmmmmm…  Perhaps we are. But probably not. It is probably a normal day for us, but the first time you have noticed us letting our front down unable to keep up the facade any longer. Perhaps we are finally letting you in to see what we live with. Perhaps we are just having an “all fall down” kind of day. You can’t really tell us what kind of day we are having, though. You don’t know the battles we are fighting or what we are coping with on a daily basis. We say we are OK but that may just be because we are too tired to explain how we are really feeling.

13.  It’s all in your head.

Really? You think I would make something like this up? You think I enjoy this? Do you honestly think we would want this? I would not wish this illness onto my worst enemy. But it is very real. It controls my life. It shows me what I can and cannot do. It has built me into the person I am today, but it is most definitely not all in my head! It is not psychosomatic.

14.  There are people worse off than you.

Absolutely. I agree. And I pray for those people, as well as working with them on a daily basis through my work with Rare Diseases SA. But when people say this to me, it is said in a condescending way that makes me feel stupid or like I am putting this whole thing on. I am grateful for all I do have in my life and I do not need more negativity coming my way!

15.  Maybe if you lost some weight you would feel better.

Grrrrr! This one grates my carrot. Yes, I probably am looking bigger than I did last time you saw me. It is most probably as a result of all the medication I am on. These cause water retention, which in turn causes “moon face.” It is not attractive. I hate having pictures taken of myself and seeing how big I look. I am trying so hard to lose weight, but it is not easy. I cannot exercise, and I try to eat what I can — depending on how my swallowing is at that particular moment. But telling anyone, especially a girl, that they need to lose weight is like poking a sleeping bear. Not clever. I would love to lose weight — and I am trying. 


This post is for every brave rare warrior fighting their own battle that others do not understand. I just want to create awareness for what people say. Watch your words. They can hurt. They can be taken the wrong way, especially when the other person is having a sensitive day. Every day we are fighting a battle. We try so hard to be strong and make it through the day.

Support us.

Love us.

Make us laugh.

Keep us positive.

Give us a hug.

But most of all, try to put yourselves in our shoes.


Fundraising Like Your Life Depends On It…

We never plan to get sick… especially not with a rare condition or in need of a life-saving procedure that isn’t covered by medical aid, let alone our own pockets. And fundraising to keep living is definitely never thought of!

Fundraising has become an important part of living with a rare condition. It has allowed many of us to keep living; to see that doctor; to have that operation; or even join a trial. For me, it was having the first ever stem cell transplant for Myasthenia Gravis in South Africa.

Getting to the point of having to ask friends, family and even strangers to help fund your medical treatment is never easy, and we explored every available option before we had to do this. We consulted with many doctors around South Africa, and they were in contact with doctors overseas who had successfully done this trial treatment. We sent this information on to my medical aid, and when this was denied, we appealed it after doing further research and requesting my treating doctor to motivate for it. When this was denied yet again, we approached the treatment centres overseas to see if they would accept me there – which they would, but at an expense that included travel and accommodation.

There was constant communication, constant reaching out to the medical aid, and constant phone calls to see what other information we could possibly submit to make the transplant a reality. There wasn’t one single day where we just sat back, and I think this was really the start of my realising the importance of getting all the facts, never giving up, and constantly calling whoever possible to make this life-saving treatment a reality.

There were loads of tears and absolute despair, but there was also a fire deep inside of me that wouldn’t allow myself to give up.

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So when the medical aid decided once and for all that they wouldn’t cover this, we had to look at what our other options were. We approached the doctor who was willing to complete the transplant, and asked for an estimate of what this transplant would cost – from the hospital stays, to the medication, to the blood tests, and the transplant itself. Medical aid wouldn’t pay for anything, so we had to ensure that we knew beforehand a good rough quote of what we needed to raise.

Once we had received this quote, we set up a fundraising campaign through BackABuddy I wrote out my story, found some pictures, and received references from my doctor and Rare Diseases South Africa that I sent to them so they could authorise my application. You can choose to have the funds paid directly to the bank account of the doctor/hospital so all donors can be sure of where the funds are going as well. [There is a 5% administrative fee that Backabuddy takes on all donations, so keep this in mind when selecting the amount that you need to raise.]

I was assigned a specific contact person at Backabuddy who helped me with ideas on how I could improve my reach, better my profile, and hopefully reach my target. They were very helpful, kind and patient with me; and their advice made all the difference.

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Photo by Andrea Piacquadio on Pexels.com

Next comes more work… but it is the only way you can make your fundraiser work. You need to share, share, and SHARE the link for your fundraiser. Share it on your social media pages, ask your family to share it to theirs, and get your friends to share it with their networks too. Reach out to media houses, radio stations, and celebrities. Make sure that as many people as possible are seeing your link – even if they can’t personally donate, they can share the link and potentially reach someone who can.

Make sure your fundraising platform has constant updates on where you are in the race to fundraise, what reaching the next milestone means; and post updated information/photos/videos. If possible, I would also recommend creating a social media page to keep people updated with all this information as this also makes it easy for others to share your updates and reach others. You never know how your post could encourage others to keep fighting, or even just touch a person so that they want to help you win your battle. If possible, share them to your local Facebook groups/pages as well.

Hosting events (physical or virtual) is also a great way to get people involved. Phone around for donations and form a raffle of sorts. Get branded clothing made up that people can order with some of the funds going into your kitty. Ask to host speaking events at businesses/corporates to tell your story. Get local businesses involved, and be sure to publicly name each of them and show your thanks for their generosity.

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Messages of thanks are vital. There is an option to set these up as automatic responses on the Backabuddy site, but I would recommend personally contacting everyone who gives to your fundraiser as a sign of good favour and thanks. Whether it be R50 or R50,000 – they all deserve to be acknowledged and appreciated. And those small amounts do add up, so don’t ever discount them!

Once you have reached your target, send out another thanks to everyone and remind them of what this means to you. It means a chance at health, and a second chance at life. Share your dreams, aspirations and excitement. Again, if you have a specific social media page for your health journey, share it all here as well so people can celebrate with you.

Fundraising is hard work, but it is so worth it. I can say with 100% conviction that I wouldn’t be here today if it weren’t for the generosity of friends, family and strangers towards my transplant. Don’t give up. Keep trying. And always keep fighting for a better tomorrow.

{Original article written for Rare Diseases SA here}


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


 

Stem Cell Transplant (Part 2)

I ended my last blog around my stem cell transplant with details about surviving my transplant of magical unicorn blood aka stem cells, and the fact that I could go back home to the people (and animals) that I love.

My diet was going to be extremely strict, and I had to be extremely careful of everything that I was putting into my body, as well as ensure I wore my mask at all times as my immunity was slowly lowering to nothing. Husband had to do all the shopping and take care of everything around the house as I stayed in bed and occasionally ventured out to our lounge.

Warren went to collect my mum from the airport as I went to a check-up with my doctor, and we all returned home to settle into a relaxing, safe time together before husband had to leave for work away from home again.

The next day I woke up and tried to pat down my hair from having been lying down. I couldn’t believe it when I felt all the hair coming out in my hands – I didn’t even have to tug on it and it was coming out by the handful. I was shocked and immediately shouted for my mum and Warren to come through to the room. They told me to try not to touch my hair, and walked me back through to the lounge to try get some food into me. I felt like I was developing a fever, and so we had to keep an eye on this – mums somehow know when you aren’t feeling well, and there really is no caregiver like a mum. We checked with a digital thermometer and my temperature was rising to 39 celsius. We phoned my doctor who instructed me to take some meds and get into a cool bath, but if it hadn’t gone down within an hour I needed to return to the hospital. For flips sake – I felt like I had just got my freedom!

Mum came with me as I was admitted into a private room, and they realised that I was completely neutroponic – meaning that I had no immunity at all. My dear darling duckling sat with me and prayed over the liquid gold that I needed for my treatment. I was in such pain, and they realised that I had developed tonsilitis – we have no idea where I had picked this up from, but they couldn’t take any chances with me being away from the hospital and I needed to be watched as they infused by already battered body with more antibiotics and medications.

My hair continued to fall out, and I filled a plastic bag within a day. I looked like I was trying out a Donald Trump-type hairstyle with a horrific comb over and bald patches. The doctors then rushed me back to the transplant ward so I was in isolation and away from the threat of catching anything else.

Limited visitors were allowed in, but I was always so grateful to see my mum waving at me through the window before she got dressed up in all her protective gear – it would be another 3 weeks before I could speak to anyone without all of these measures in place. She was staying alone at our home as Warren was now at work, and she was having to take care of our furkids, as well as never missing a chance to come visit me. By day 2 my hair had fallen out to such an extent that the nurses recommended she go get a razer to shave off the last of it so it wouldn’t be so traumatic losing the bits and pieces.

I managed to hold myself together as the last pieces disappeared off my head. Who would’ve thought that losing my hair would be the final nail in the coffin with my emotions and what I could cope with? I cried as I held the last of the hair in my head, and was terrified that my husband wouldn’t find me attractive without my hair.

Over the next few days even those little bobbles of hair disappeared, and I was left with a shiny head – and not knowing where to end my face cream anymore!

My life consisted of those 4 walls, with my bed, a chair for visitors, and a TV – as well as my own toilet and shower. And that’s all I saw. The nurses tried to comfort me, but I was craving human touch. A hug. A hand on my arm. A quick squeeze, But nothing was allowed, and even drip changes were down avoiding any direct contact. This really destroyed my emotions, and was probably the hardest part to have dealt with through this journey.

And then began the irritation – not just through my emotions, but with my skin reacting to the plasters and medication that was constantly being pushed into my veins. I developed rashes all over my body, and I began to ache in all my big bones – this is great as it is a sign that the stem cells were settling in and beginning the multiply but holy crap that pain was unreal. Even with the strongest pain killers and sleeping tablets I still couldn’t get comfortable and would lie alone in my cell crying. The constant checking of my blood sugar also meant that my fingers were left bruised and sensitive, and all the cortisone means that any movement resulted in further bruising and pain.

But of course there were still good days. There was dance parties with the nurses through the glass windows, there were chats on the phone, and best of all there was seeing my mummy every day – something I really missed since moving to a new province.

I received multiple blood donations during this time too, and funnily enough looking at it always made me feel a bit weird. I guess I’m not as strong as I like to believe! My mum then had to leave to go back home to work, and luckily my sister arrived the following day to come take care of me as I was going home. She was very excited to get dressed up in all the hospital garb and experience life on the “inside”.

I was so excited to get home, and I think the excitement was too much for me as I collapsed on the couch the moment we walked in and my sister had to wait on me hand and foot. I felt extremely weak, and even needed her help to bath as well as walk the two small steps into our bedroom. I don’t know if it was all the emotions that overwhelmed me, but that weakness scared both of us and we were sure I was going to end up back in hospital – which I definitely didn’t want.

But, this was the end of the stem cell transplant journey, and I was thrilled to discover that my immunity was starting to build up again and every day I felt a little stronger than I did the day before. I was no longer choking on food or slurring my words, and I truly believe that I have been given a second chance at life – a second chance at LIVING.

I was off work for 3 months in total, and I spent this time rediscovering who I am, without being identified by my illness. I played with makeup, finally got to venture out into the world with my shiny bald head, and got to play with my pooches. I had my nails done by my friend, and I had the time to allow my body to recover and recuperate after everything that I had just put it through.

My stem cell transplant was possibly the most difficult thing I have ever been through, and I don’t think I would ever have the strength to go through it all again. However, I am living a life now that we didn’t think would ever be possible. I am not in full remission as we had hoped, but I am better than I have been since my diagnosis in 2004 and for that I am extremely grateful.

I would especially like to thank Dr Gunther and all the nursing staff at Olivedale Hospital for their support and belief in me and this treatment. Without them this would not have happened, and I doubt I would still be here to share my story.

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.


 

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

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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