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.
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| Happy New Year from Warren & myself! |
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.
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| Mummy & me |
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| With the in-laws at Christmas having some fun |
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| Me & my special mother-in-law |
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| Owen, my precious nephew, & me |
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| 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! |
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| My special family - only missing a few here! |
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| 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.
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| With our JHB "family" |
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| A friendship that has stood the test of time. |
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| With my boss/mentor/friend |
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| FaceTime with Farlz - one of my absolute FAVOURITE people from school days |
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| My beautiful friend Kim (from Canada) who I met in Spain. |
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| Me & Helen on our bonding trip to Spain. I couldn't imagine my life without her & her cartwheels! |
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| 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! |
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| Candice is a fellow snowflake & someone very special to me |
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??
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| With Zahidah (another MG warrior), Nicole Capper (Mrs South Africa) & Jonathan (Top Billing presenter) from our Top Billing experience. |
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| "Wonder" movie premier |
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| Tourist selfie in Spain |
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| With Nicole Capper for her "I See You" campaign on Facebook. |
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| Me, Nico & Kelly at our first ever Patient Huddle |
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| 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.
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| 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!
I was diagnosed back in 2016 and I started off with only ocular Myasthenia Gravis it happen while I was in college one semester and a family member encouraged me to go to the hospital because my eyelid begin drooping severely (I was going through some major stress and poor diet at the time) and it progressed to generalised Myasthenia Gravis effecting my entire body. Before I was diagnosed I did not have any health issues. Currently I am stable and have regained my faculties fully through all natural treatments. BEST HEALTH HERBAL CENTRE has the best herbal formula for Myasthenia Gravis, I only use the herbal formula for 10 weeks. Now am living MG free. visit their web-page for information ww w. besthealthherbalcentre. co m.
ReplyDeleteI had myasthenia gravis since 2015. I got medically discharged out of the Army, a job I loved well. My heart had 5 myasthenic crises, 3 being severe enough to be ventilated or require CPAP (continuous positive airway pressure) helmet. I have had countless plasma exchanges as my veins are bad. I also needed Hickman lines inserted. I have been on azathioprine, mycophenolate (CellCept), methotrexate and none have worked. I'm currently done with my herbal remedy I purchase from totalcureherbsfoundation .com which has totally cured my condition with a surprise after almost four months of their usage, I was discouraged and never thought I would be myasthenia gravis (MG) free ,to me the best to get rid of this condition is totalcureherbsfoundation com treatment because all medications I used never worked include mycophenolate (CellCept)
ReplyDeleteI'm 59 years old and female. I was diagnosed a couple of years ago with COPD and I was beyond scared! My lung function test indicated 49% capacity. After having had flu a year ago, the shortness of breath, coughing and chest pains continued even after being treated with antibiotics. I've been smoking two packs a day for 36 years. Being born without a sternum caused my ribs to be curled in just one inch away from my spine, resulting to underdeveloped lungs. At age 34 I had surgery and it was fixed. Unfortunately my smoking just caused more damage to my already under developed lungs. The problem was having is that I enjoy smoking and don't want to give up! Have tried twice before and nearly went crazy and don't want to go through that again. I saw the fear in my husband and children's eyes when I told them about my condition then they start to find solution on their own to help my condition.I am an 59 now who was diagnose COPD emphysema which I know was from my years of smoking. I started smoking in school when smoking was socially acceptable. I remember when smoking was permitted in hospitals. It was not known then how dangerous cigarettes were for us, and it seemed everybody smoked but i was able to get rid of my COPD lung condition through the help of total cure herbal foundation my husband bought, totalcureherbsfoundation .c om has the right herbal formula to help you get rid and repair any lung conditions and cure you totally with their natural organic herbs,it class products at affordable prices because how awful it is with this lung dictions . I wish anybody who starts smoking at a young age would realize what will eventually happen to their bodies if they continue that vile habit throughout their life, certainly total cure herbs is the formula to get over Chronic Obstructive Pulmonary Disease.
ReplyDeleteI was diagnosed with Myasthenia Gravis in 2014, 2 years after they removed a tumor on my thymus. It's been an okay road. Had one flare which put me in the hospital 4 years ago and this previous year I have been in and out of the hospital trying to see which treatment can get me back feeling 100% again. Pyridostigmine bromide just makes me nauseous all day and didn't help my droopy eye or swallowing so I need to try something else which was natural herbs recommendation from multivitamincare. org This herbal treatment has successfully cure my MG and am 100% free ,I completed the herbal treatment program last year December and am very delighted i came across their website.it starts in the eyes and face then bulgar muscles , without treatment or the proper dosages of treatment it goes on to my limbs and then neck and breathing muscles but I can happily say that am free from MG after taking my chances to try natural herbs ,my neurologist was surprise after my result of being totally cured with herbal cure from the org.
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