Wednesday, 6 June 2018

Port & Perm-Cath

Recently I had to be admitted again to have a port & perm-cath inserted.  This was my third anaesthetic for this year, & that thought alone terrified me as having MG is a huge risk when being put under.  We had to be at the hospital before 6am & I was second on the list to go through - so at least I didn't have to wait too long with a grumbling tummy!



I have never had a port inserted, although I know about them & have often had discussions with my doctors about having one inserted - especially recently when my veins have just been giving up on me!  The surgeon I went to has inserted all my other perm-caths & knows me well, so I knew that I could trust him completely.  He saw me before I went under, squeezed my hand & told me that everything was going to be ok.  I really appreciated it, as I was stressing whilst I was lying waiting to be wheeled into theatre (in my super sexy one-size-fits-all paper panties & hospital gown - please can someone design something that doesn't look so dreadful?).

The pics above show how the port is inserted, & what it looks like under the skin.  It takes away the horror of them having to dig for a vein as they simply insert the needle into the spongy centre part of the port.  Currently you can see the shape of the port in my chest, but as time goes on this should settle more & you won't even know that it is there!

I had my perm-cath inserted at the same time as I am still having to go in for plasmapheresis & they cannot continually insert temporary lines as my veins are filled with scar tissue & the pain is unreal when they try to break through this.  I didn't want to have to go under again, & also I don't think my medical aid would like me having to book in again!


About 3 hours after my operation I was finally wide awake enough to message friends & family to let them know that I was fine - and I took the beautiful photo above.  Can you tell I am still a bit high on the medication & very unimpressed with the pain?  Gee whiz - the pain.  It was unreal.  I felt like I had been hit by a train in my chest & was completely miserable.  I don't usually ask for pain killers, but this time I had to.  I just couldn't cope with it.  For such a small operation it sure did have a huge impact on my body!

A couple of hours after this my doctor came & said they were happy with how I had recovered so I could go home - that same day!!!  I have NEVER had such a quick hospital stay & I was so excited to go home to my own bed to recover.  I kept a cushion on my chest at all times to protect everything from my dogs as they love to give kisses & cuddles, & we couldn't risk anything being pulled out/scratched.

Since then things have got better day by day.   I am still quite tired & sore, but I am able to move around a lot more & at least I could take off some of my plasters - I react so badly to these & sometimes think that the itching may have been worse than the actual pain.

Three Days Post-Op
Tomorrow I am getting my stitches taken out & the perm-cath dressing changed with one of my favourite nurses - Jenny.  I haven't seen her since my last line at the beginning of the year & she is such a vital part of the team that takes care of me.  I can't wait!

We will be starting chemo (through my port - eeek!) in about 3 weeks time.  I am almost finished with my antibiotics for the PCP pneumonia, & once that is done I will have more blood tests & then the new treatment begins.  I am excited, but also very nervous.  Chemo is no fun, but I am hopeful this will make a difference in the quality of my life - and at least I have the pipes in for any plasma that I may need.

Onwards & upwards!

Friday, 11 May 2018

Destination Unknown

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


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


The Gauteng MG Warriors - some of us
So now, back to Cape Town...

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

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

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

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


Date night with husband 

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


Onwards & upwards!

Monday, 12 February 2018

Just breathe...

At the end of last year, a friend reminded me how important it is to go for all my check-ups - I had been so focused on my MG throughout the year that everything else had fallen by the wayside.  I hadn't even gone to the gynae since my miscarriage in January 2016!  After her constant nagging reminding; I made an appointment with the most amazing doctor & went in for all the normal checks & tests.

On my husband's birthday, we got a phone call to say they had found abnormal cells & I needed to go into his rooms asap for a biopsy of my uterus - aka a "womb punch".  I have had abnormal cells before, but they lazered them away without too much concern.  However, my new gynae wanted to make sure he knew what it was before we did anything.
I went into his rooms, absolutely terrified of this unknown!  Let me tell you something now - they say it doesn't hurt, but that's a great big lie...  Take a pain killer before. You are awake & quite able to feel everything that happens.
He also told me I am now insulin resistant, so need to add Glucophage to my daily intake of meds, as well as cut out all additional sugar from my diet.  No more chocolate or sweets, but rather try get my body as healthy as possible.  We think this is all as a result of the prednisone I have been on for many years, & the horrid side effects this has.  What may help me now has so many long-term effects, & I am only seeing a lot of these now...

I am very glad I went for the biopsy though, as I needed to know the results.  As painful & terrifying as it was; when they called to tell me I had tested positive for early stages of cervical cancer; I was so grateful to my friend for pushing me to make an appointment & that we could sort it out now.

My surgery was booked for 10/01 to remove endometriosis; ovarian cysts; CA cells; do a full D&C; & remove my remaining tube as this seemed to keep blocking up & causing infection.  I wasn't too nervous as I knew I was in the best hands possible & it would be a quick recovery - I have had them often enough to know I can handle this!

More scars added - luckily just little ones though!

The morphine drip that was my very good friend
My surgeon was happy with the results & I was discharged the following day with strong painkillers & instructions to just rest & take things easy - follow up in a months time.

Ok, I've got this!  Not the best start to my 2018 (I was meant to go back to work on the 10/01 & instead was being wheeled into theatre), but now all the baddies have gone; he managed to get all the cancer cells & now we can focus on moving forward...

The recovery from this op seemed to be more difficult than before, & I was absolutely exhausted the whole time.  I thought perhaps the pain killers were too strong for me, as I hardly ever take them so I decided to stop these.  Still I felt completely lethargic & constantly out of breath; plus my heart would go crazy then seem to slow right down.  I researched the Glucophage to see if it could be that as my dose had been increased & I found the following:
  • tiredness
  • weakness
  • unusual muscle pain
  • trouble breathing
  • unusual sleepiness
  • stomach pains, nausea, or vomiting
  • dizziness or lightheadedness
  • slow or irregular heart rate
Well, this is pretty much everything I was experiencing, so it must just be the meds right?  My body just needed to adjust & I just needed to push through.  I spoke to some other friends who had been on it as well, & they said they also battled initially but once their bodies got used to it then everything was much better.  Right, so I'm just a wimp!  Time to put on my big girl panties & deal.

However, the following weekend my husband & I quickly went to the shops to get a birthday present for a friend's daughter & I almost fainted while we were out.  I could hardly keep up with him in the shops, & I was sweating by the time we made it back to the car.  I honestly thought my lack of fitness was catching up to me, & I was more embarrassed than anything else.  I took things easy for the remainder of the day, & missed our friends' braai so I could have an early night cuddling my dogs.

On Monday morning I woke up & still felt a bit short of breath, but knew I needed to pop into the shops to get my sister's 40th birthday present.  I parked at the closest parking possible, & made my way inside - taking my walking stick just in case.  I had to pause at every seat along the way to the shop; take a breather; & almost passed out a couple of times.  I realised something was not right.  This is more than just my meds!  So I phoned my doctor who had administered my Rituximab & made an emergency appointment to go in & see her - she had said to me that if I feel any signs of a cold or flu coming I needed to go to her so we could sort it out quickly.

I walked into her rooms & collapsed on one of the chairs in the chemo treatment room, where I promptly burst into tears.  I was absolutely exhausted & so confused about what was happening.  Why was my body doing this?  What was going on?  Am I taking too much medicine now?
My pulse was 172, & BP was 145/100 - just from walking the 10m from my car to the rooms.  They decided to do blood tests & a blood gas (from arterial blood - not fun & so painful...) & they made me a cup of tea while we waited for the results.

Surprise!  Hospital admission - urgent.

A porter was called from the hospital & I was taken straight through to the ward where I was put onto oxygen & sent for X-Rays & a CT scan of my lungs.  They knew that something was wrong, but we weren't sure exactly what.  
Their fears were a clot in my lungs & we needed to see this asap!
I was not prepared for a hospital visit - all my meds were at home, my car was still in the car park at Dr Gunther's rooms & my cell phone was about to die & I had no charger.

I rushed off to get the Xray & CT scan then returned to my room to wait for the results...  That evening my doctor came to say the results weren't conclusive so we were going to have to either do a needle biopsy of my lung or a scope to try find out more.  
"But don't worry, you will be asleep for these!"
Well thanks, I am so glad.

Just after she left, the originals were all delivered to my rooms & I got to see what my lungs were doing...

You can see my perm cath & stitches from my Thymectomy here too

Not very pretty lungs


Those white bits in my lungs?  Those shouldn't be there...



I had no cooking clue what this all meant, & sent the images to my boss & family to let them know.  They were clever - perhaps they could tell more than me.  But nobody was saying anything.

The next day my doctor came back to see me & said she had found a cardio thoracic surgeon to perform the biopsy but she was currently in surgery so would come see me when possible; but they were starting me on an antiobiotic straight away just in case.
I asked her for the truth of what my scans were saying, as they all seemed a bit nervous.  She told me it was one of 3 things - a really bad infection (e.g. TB); another autoimmune disease; or lung cancer.  Given the fact that I had CA cells removed a week earlier, this didn't sit well with all of us.

My friend came & sat with me for the whole day so I wouldn't be alone with my thoughts & concerns & she was also there to help me sort through my emotions.  We discussed the reality that this could be it for me.  I may not make it through this op, as my lungs are already compromised from whatever this is; plus my muscles are so weak from my Myasthenia Gravis; plus I had an anaesthetic just over a week ago.  It really hit home for me.
I did realise the following:
I do not want extreme measures to be taken to keep me alive.  I don't want to be a vegetable or a burden on everyone else forever.
I am signing DNR forms.
When I die, I want a celebration of my life!  No sadness & tears, but a party with music & laughter & balloons - think of Kate Hudson's character in "A Little Bit Of Heaven".  That's what I want!

My friend helped me ask the right questions to the doctors & could take in more of what they were saying at that stage than I could.  She also organised for my non-invasive ventilation machine to be delivered to me so I could hopefully start sleeping better at nighttime, & rallied around to get me food, visitors & all sorts.  

So little & neat!

My sexy mask - the machine forces air into my lungs which helps a lot when I can't get a deep breath in
The surgeon arrived that afternoon, introduced herself & picked up my scans.
When she just went quiet I knew something was wrong.  
"Megan", she said, "I am not happy to take you to theatre now.  I need to talk to the anaesthetist & prepare for this operation.  We won't be doing it tomorrow, but rather on Thursday morning first thing.  Recovery is going to be hard.  With these lungs I need to do an open lung biopsy.  This means I have to cut between your ribs under your right arm & take samples of your lungs.  We may have to deflate your lung to do this.  It is going to be difficult, & you are going to be very sore.  But we need to do this."

My heart sank.  It was my sister's 40th over the weekend & we had planned a trip to KZN to see her as they had just returned from the UK.  I had been planning for this for months.  Could the op not wait until next week?  I promise we can do it on Monday!!
"No Megan, your lungs won't take the air pressure of a flight.  We are afraid that if you fly you may die in the air.  They cannot cope with that."
Right.  Ok.  Gee.  This is actually pretty serious. 
Phone my sister.
Cry.
Hand phone to friend to pass on the news.
Throw temper tantrum.
Cry some more.
Swear.

Wednesday was spent with friends from work constantly popping in with treats & spoils, visiting the cardiologist ("You have a good strong heart Megan!  Nothing to worry about here!" - good news at last!); & going for more tests.  Operation is set for Thursday 8am.  Shew.

Thursday...

I'm ready!
They bring me the super sexy hospital gown & one-size-fits-all broeks - which I promptly place on my head & wait for the nurses to say something.  I needed laughter & happiness to fill the gaps that fear & concern were making in my soul.  They told me I'm not normal & gave me a big cuddle to help ease my heart.  My friend arrived by my bedside, squeezed my hands & told me everything would be ok.  Pre-op meds were given & off we went...

This was it.  I didn't even get a chance to message everyone.  
Was I going to make it through this?  
What was the outcome going to be?  
Can I go home now?  
My mind was full of so many questions, but at the same time I was already getting sleepy from the meds & just wanted to relax into the bed - now I understand why they give you these!  We were told the op would take maximum an hour & I would then be taken to ICU so they could keep an eye on me.

127 minutes later I was wheeled out of surgery into ICU.  I had made it, & didn't even need to be on a ventilator!  They had needed to reinflate my lung, but otherwise all went well.  They also removed my perm cath so for the first time in a year & a half I don't have a pipe hanging out of my chest!!  They were happy.  I had morphine, a thoracic epidural for my lung area & I was floating - as long as I didn't try to move.  I had a drainage pipe to get rid of any muck/blood that pooled around the biopsy area & I was left to sleep for the remainder of the day - except for when the physio came to get me to sit up.
I almost vomited from the pain & they quickly realised it wasn't going to work today!

Friday...
Sleep, & I managed to sit up in a chair thanks to the physio.  They said I needed to fight through this as we needed to start expanding my lungs & get them working again.  I was determined to be able to breathe better asap so I didn't give my body a chance to back out.  We still didn't know what this was, but my samples were being tested & I knew we would have answers soon.
I even managed to walk to the entrance of ICU with a walker & the physio holding on to me very tightly!  However, going off the oxygen is not an option as my stats dropped every time we tried.


Saturday...
Drainage pipe out!  Catheter out! Arterial line out!  Woop woop!  I manage to walk to the bathroom on my own with the walker & don't pass out.  I still can't move too much without pain, but every day is progress.
The doctors come that evening to say that the blood tests etc have shown that I don't have an infection as my white cells are completely normal - so no TB.  This is good news, but at the same time it says that this is most probably lung cancer.  I don't know how to take this.  My mind is going crazy.  How is this happening to me??

Sunday...
Morphine drip removed - I was managing without it & didn't want to become addicted.
I sent the following message to my family:
"Hi guys.  Managed to sneak my phone in.  Still in ICU - had a bit of a scare this morning when they thought I had an embolism in my lungs but luckily it seems to be ok.  Tests for TB & other infections have come back clear, but we are still waiting for the others.  I was on antiobiotics just as a precaution after the op too!  I'm very sore but managing to walk short distances on my own.  I'm going to be on oxygen for a while now until we can sort my lungs out but I'm feeling positive :)"
My heart kept going into V-tac & they sent me for more xrays, & the cardiologist came back to see me.  Everything came back clear & we just put it down to my crazy body.
Still no clear diagnosis as to what was wrong with me though.

Monday...
My sister & Dave arrived from KZN to come see me.  They spent nearly the whole day at my bedside talking to me & keeping me calm.  Just after they left for the evening, both my doctors arrived at my bed & I went absolutely cold.  This was it.  I could feel it...
"Can I phone my husband?"  I asked them before they could say anything.
"No Megan, it's ok!  You don't have cancer.  You have a very rare lung disease called PCP Pneumonia.  It is common in AIDS patients.  Because you have no immune system from all your treatment for Myasthenia Gravis, you white blood cells couldn't fight it & thats why it didn't show up in your blood results."
They went on to tell me that they have never seen this so advanced in anyone that was so alive, & by my results I should be either frothing at the mouth or 6 feet under.  I should not still be sitting up & talking to them, let alone walking around.  The technician who did the biopsy asked if it was part of an autopsy!
I was immediately started on very strong antibiotics, as well as nebulizers & I finally slept through the night.

People asked why I was in ICU for so long if it was "just Pneumonia".  For one, I needed to be constantly monitored as my oxygen levels were dropping; secondly my lungs are so damaged that I cannot breathe properly; & thirdly this isn't your average case of pneumonia!  I wish it was that simple...

I was finally discharged on Wednesday at about midday, after receiving an oxygen tank for the trip home & my own machine to provide me with oxygen for whilst I am away from the hospital.  My sats kept dropping when I went off the oxygen & we didn't want to take any chances!

So now, this is where I am.  I am taking 4 antiobiotic tablets 4 times a day; along with 12 prednisone every morning.  Add to that my pain killers, anti-nausea, tablets to prevent stomach ulcers & sleeping tablets means that I seem to be swallowing more tablets than food.  I don't have much of an appetite, but am now managing to be without oxygen for much longer periods of time & can even walk up stairs without needing a break!

The doctors told me that they were convinced it was cancer & they were terrified to tell me that - they also didn't think I would make it through the op so I am a walking miracle.  So now, now I am going to live my life.  I am going to take a deep breath in, breathe out & march forward through everything that life has to throw at me!

Wednesday, 17 January 2018

Reflections

2017 was a difficult  horrid trying year for me, & for many others that I have spoken to!  I don't know what it was about it, but it just was not pleasant & I am so glad to have it behind me...

But, this post is not going to be about all the bad times, or the fact that I was hospitalised more in 2017 than I probably have been in my entire life put together (& that's a lot for me!); instead I am going to write about the lessons I have learned.
Happy New Year from Warren & myself!
1.  Family are there for you no matter what - even if they aren't able to be there physically.  
I think I have given my poor family a few grey hairs over the past year, but they still love me.  They message me; visit when they can; FaceTime me at least once a day (ahem - this would be my sister who was living in England & wanted to check up on how I REALLY was!)  They know that we are not exaggerating the situation, in fact we are most probably underplaying just how scary & difficult things are.  Although we are living further away from most of our family than we ever have before, our relationships are stronger than ever & I really feel blessed to have them all in my life - even my bossy aunties!!!!
They love me for me, warts & all.
Mummy & me

With the in-laws at Christmas having some fun

Me & my special mother-in-law

Owen, my precious nephew, & me
Millie, my cousin's daughter & my goddaughter had such special bonding time this year when I went to Cape Town for a doctor's appointment.  It is scary how much she reminds me of a younger me!
My special family - only missing a few here!
My sister; Dawie-darling & me on our trip around London!

2.  Friendships can be found in the most unexpected of places!
I have made such amazing friends here - the type of friendships that you read about in books or see in movies.  Friends that I could phone at 2am & they would rush over to be with me immediately.  Friends that brought me home cooked meals when I was going through chemo so I wouldn't have to cook.  Friends who would send me an encouraging message when I was having a tough day - without even knowing how much I needed it.  Friends who drove out of their way on Christmas Day just so they could come give me a squeeze & we could have a quick catch up.  Friends who get my crazy & love me for it.  Friends who drop everything to take me to/collect me from yet another hospital stay.  Friends who didn't mind me going to lie down on their bed to have a snooze while we were there for a braai.  Friends who added me into their inner circle as if there was always that spot just waiting for me.  Friends who understand that even if I don't always reply to messages, they are always in my heart.
I have made friends in hospital; at an amazing international conference that I was lucky enough to attend; through my support groups; through my job but mostly just from people who were there for me no matter what!  This is a shout out to those friends who make my world a better place - I have never known such support & love; & it certainly makes everything a whole lot easier.
With our JHB "family"

A friendship that has stood the test of time.

With my boss/mentor/friend
FaceTime with Farlz - one of my absolute FAVOURITE people from school days

My beautiful friend Kim (from Canada) who I met in Spain.

Me & Helen on our bonding trip to Spain.  I couldn't imagine my life without her & her cartwheels!

Navasha & I met on a FB group that we were both in & we just clicked.  This girl has been there for me through everything & always finds the time to pop in with a smoothie & a smile.  I am so grateful for her!
Candice is a fellow snowflake & someone very special to me
3.  Opportunities fall into your lap when you least expect it.
I think so often we take life for granted.  Being able to rush around with work & play; run a 5km fun run; attend events; being able to actually swallow & enjoy a meal etc etc.
This past year has taught me my limits, but it has also taught me that I need to appreciate every single moment of every day. 
Read that book; tell people you love them; work harder & with more heart; be kind; & live every day as if it is your last.
This year I got to go on my first ever big overseas trip; I had some amazing interviews to create awareness about Myasthenia Gravis & Rare Diseases as a whole (some when my talking wasn't great; but this helps to show a side of the disease that I often don't want to); & I got to meet & spend time with our beautiful Mrs South Africa - who I can now consider to be a friend.
None of this would have happened if it wasn't for me having Myasthenia Gravis.

Nicole Capper featured me on her "I See You" FB page; we had a whole episode of Bophelong devoted to Myasthenia Gravis & Rare Diseases; I was interviewed by my favourite radio presenter, Jane Linley-Thomas from East Coast Radio; one of my favourite blogs that reminds us of the good in life, Good Things Guy, did a feature on me; my special friend from "I Have A Name" did a feature on creating awareness for invisible illnesses; ANN& Shape Your Life did a segment on living with a Rare Disease; I was featured on The Mighty - with 2 different posts! - here & here; I was one of the patients featured on Rare Diseases SA platform for MG Awareness Month; my mum-duck wrote an amazing article from her heart about being the mother of a chronically ill child; & News24 helped create awareness through this article.
Shew - writing those all down really made me realise how much awareness was created this year!  It blows me away.  Next stop Ellen - hey, a girl can dream right??

With Zahidah (another MG warrior), Nicole Capper (Mrs South Africa) & Jonathan (Top Billing presenter) from our Top Billing experience.

"Wonder" movie premier

Tourist selfie in Spain


With Nicole Capper for her "I See You" campaign on Facebook.

Me, Nico & Kelly at our first ever Patient Huddle

Some special friends I made earlier in the year, & we were all interviewed by Anele!


4. Mental Health is just as important as physical health
For years I was too ashamed to admit that I wasn't coping with my diagnosis & the limits it was placing on my life.  This year I finally owned up to it & was put onto antidepressants.  I was so ashamed; until I realised just how much they helped!  I could cope with life.  I wasn't crying every day.  I wasn't lashing out at people.  I was finally getting back to my old self, my happy self.
Take care of all the different parts of you - emotional, physical, mental & spiritual.  It really does make a difference.

5.  Doctors & nurses are human too
I have been so lucky to have found the doctors that I have here in JHB & Cape Town (my MG specialist).  They truly care about me; give me hugs at the end of my appointments & only want the absolute best for me.  They have cried with me when I have relapsed & done a happy dance with me when things improve.  The nurses have become my friends & I often pop in just to go say hello to them - I am always welcomed with hugs & "when are you coming back?".  They have held my hands; brought me tissues; welcomed me "home" & truly cared.
We often forget that they are people too that have their own lives; their own trials; their own battles...  Yet they put this all aside to care for others & provide support.  They see the real side of patients, yet they still love us & do all they can to make our lives that much easier.
My doctors have never given up on me.  They have fought for me & kept trying new treatments to improve my life.  I wouldn't be here today if it wasn't for them.

6.  Find a job that you love
I was terrified leaving my stable job with a stable income & doing something that I knew & understaood when we moved from KZN.  I wasn't able to find a job here in JHB due to my constant hospitalizations; & this is where Kelly stepped in.  She offered me a part-time job that I could do when I felt up to it so I could still earn a form of income & not put undue pressure on my husband.
Over time, I have realised that this is my passion!  I love what I do.  I love interacting with patients & helping them as best I can.  I love the ladies that I work with & the fun that we have when we are together.  I have never been happier doing any type of job & I look forward to turning on my laptop every day.  No 2 days are the same & I am constantly learning.  I have become more compassionate; more understanding & also finally found my voice in society.
Kelly, Shevaun & myself - some of the team

So, 2017, you have taught me a lot of lessons.  But, you have shown me that there is always sunshine after a storm.  I have learnt to see the positive in every day.  I have learnt to #ChooseKind. 
But most of all, I have learnt to never give up.  Even when it feels like it is the end of the road; we are still on a journey.  Enjoy the views.  Sit back, relax & look forward to what is still to come!

Sunday, 5 November 2017

Seeing more than face value

This year has been a complete mishmash of emotions & events -
Hospital visits at least once a month; new drugs; new treatment; new doctors... 
Relapses; tears; laughter; hope...
Insecurities; positivity; negativity; love...
Learning my limits; pushing too hard; walking sticks; medical mask...
Friendships; braais; naps; working...
Care; support; loss; family...

I wrote a story on my private Facebook page about how I had been judged for wearing my mask out in public - one that I was told I needed to wear as the treatments I am on has destroyed my immune system & there is a high chance of infection.
I had an amazing response to this (with a few negative comments, but I have learnt that you will always get these trolls!)
My main point of ranting & writing what I did?  To create awareness for Invisible Illnesses - as we are all fighting a battle that many may not know about.  And we need to learn to be kind to everyone that we come into contact with.  You never know whose day you may be brightening!

My story was then shared by "I Have A Name"



This was amazingly picked up by "Good Things Guy" (if you haven't subscribed to this blog then you need to do it right now!  We all need to remember the good in life!)

This has lead to so many patients coming forward, registering with Rare Diseases SA & we have been able to offer support to all of them & help them realise that they are not alone.

The Times also shared my article, & this completely blew my mind.  I never expected my little rant to reach so far, or for the support & love to be poured out from all over SA.  Invisible Illnesses are now being recognised; kids are being taught to ask questions & not just point & stare; parents are reading up more; patients are not simply being judged; & slowly slowly the world is becoming a better place - step by step.

Working for RDSA, I have realised the need to create awareness & I will never give up on this!  I do not want it to be a "look at me, look at me situation"; but rather for people to try to understand so many of our patients who are in constant battle with their bodies & never give up.  They are superheroes in my eyes; & I am inspired on a daily basis by what I hear & learn from those around me.

So please, learn about the different Rare Conditions, ask questions, offer support & know that you are never alone!

To finish off, I really want to share this amazing interview that I had earlier on in the year with ANN7.  I was so grateful that I had just come out of hospital as I was feeling strong, & was able to talk without slurring.  This was definitely a good day for me & a highlight of my life!


I am still waiting to hear back from my medical aid with regard to the latest treatment plan, so once I know more I will update all of you.  We were really hoping the last lot would put me into remission, but unfortunately this wasn't the case.  My lung capacity has also dropped significantly, meaning that the muscles in my lungs & diaphragm are very weak & not working to their full potential.  This terrifies me, but I am hopeful that this next round will make the world of difference!

As Ellen says, Be Kind To One Another.

Chat soon xxx