Tag: chronically ill

Better Box

Candice is a friend of mine that I met through Rare Diseases South Africa. She is such a brave woman, and is someone who is always looking for ways to make others happy. She reached out to me before lockdown about her idea for “Better Box”, and asked if she could include some of our Rare Bears in it. We discussed what she was planning to do, and I knew that this was really something special! Each box is put together with so much love and thought, and she is spreading kindness with every one sent out. Keep reading to learn more about this project, and see just how special it really is.


Your name: Candice Schutte

Business name: Better Box

Social media handles: Website, Instagram and Facebook

Some fun facts about you: I am a fun loving mom of 2 with a passion for anything creative and quirky. I have always been community driven working with Girl Guides Association SA, headed up CI for workplaces and was Miss Cansa 2000. I fundamentally believe in the value Kindness is Contagious and this is the mark I want to leave on the universe.

Tell me a little more about this business: Better Box was dreamt up in my hospital bed. Many times I lay in hospital having a real pity party for myself – the pinnacle being my 30th Birthday! I knew that people cared and were concerned for me but when you are chronically ill people assume that after a while you just ‘got this’. Actually though you don’t, because every time you end up back in hospital its a knock to your emotional and physical state. I just want Better Box to be the little glimmer of hope for people when they are at their low, this can be in any way , shape or form. Its a little Box of Happiness to let someone know that someone cares.

What inspired you to start it: I inspired myself to start. I am currently on medical disability due to my Rare Diseases and can no longer work in a traditional workplace. Most of the work for Better Box is co ordinated by me but my family are hugely involved due to my health. I lost my dad to Marfan’s Syndrome when I was 14 and my mom to Leukemia a few years back. While my mom went through chemo I stopped working to care for her and was at the hospital every day taking food and clothes to the others in the ward with her. I 100% know that is where my passion for this really started, I just had no idea the way my life and health would take me to Better Box.

Who are some of the brands that have come on board: The suppliers for Better Box have been carefully selected as I wanted to empower small businesses run by mommies, Rare Diseases patients as well as give back to a community in some way. I would not have Better box without the Rare Bear Project and they are an integral part of my boxes. Other brands include KwirkNation, Creative Junction, Mammamade, Knits and Knots, Wylie B Vinyl crafts, Gift Boss, Oh Soap Crazy, and Hope Soaps.

How can people order one: Please go to www.betterbox.co.za to order online and email hello@betterbox.co.za for any kind of customisation.

Why do you think this is such a great idea: So much love and care goes into preparing each box, the goodies inside are practical, fun and quirky. I dare you not to Smile!

Who do you think would enjoy one: Everyone loves to feel good and spoilt!

How did you decide on each item in the box: Our Signature Box the ‘Go Box’, is designed to include everything you would need for an emergency hospital stay – believe me I have forgotten more than one of these items even when I have prepared!

Whats in the box?
Everything you would need for a hospital visit !

  • Custom made drip friendly Better Box sleep shirt
  • Warm comfy socks
  • Bamboozles toothbrush and toothpaste
  • Mini soaps and sponge
  • Earphones to tune out and chill
  • A little something to snack on
  • Colouring in to keep the mind busy and relaxed

Other boxes: Snack Box, Bump Box for new mommies, Brave Box for little ones, Be happy Box, FU Cancer Box, Donate a Box and the Box Fund
We are also running a Pay it Forward campaign:
We challenge you to buy a box for someone you know or we donate to ,and nominate a friend to do the same, every 10th box will be up for grabs for the people that purchased to gift or keep for themselves! Pay it forward, kindness is contagious!!
Lets get a Better Box chain going!
Show off your nominations and acts of kindness and don’t forget to tag us! #payitforward #kindness #cancer

What has it been like living with a rare disease: The last 12 years have been exhausting and painful. I have had countless surgeries, 36 kidney stones, gone blind in my left eye and now chronic fatigue, pain and hands that do not co operate. I am however grateful that I finally have a diagnosis as well as the ability to speak up for those with rare Disease!

Quote you live by: It costs nothing to be kind.


I absolutely adore everything that Candice and Better Box stand for, and have loved seeing her dream come alive. She has even sent a box to a friend of mine who is currently battling cancer, and it made my friend feel so special as well as reminding her just how much she means to so many of us.

If you would like to get involved in this, or perhaps even purchase one for a friend, please reach out to Candice via social media or email. Speaking from experience, I can vouch for just how much it means to receive a gift while in hospital or feeling rotten – because no matter how “normal” it is to be admitted, it honestly never gets easier.


Hospital Spoils

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

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

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

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


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

Business name:  Hospital Spoils

Social media handles:  WebsiteFacebookInstagram

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

Where did the idea for this come from:

 

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

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

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

See full pricelist here:  HS Digital Leaflet Insert 2

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

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

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

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Stem Cell Transplant (Part 1)

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

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

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

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

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


And then began the chemo…

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

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

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

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

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

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

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


 

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