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Are you feeling better yet?

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I had just completed what felt like a mini-marathon session of changing, feeding and burping my son. Both exhausted I was only too grateful when he was finally asleep on my chest. Reaching for my phone I read a text message that had come through ... "Are you feeling better yet?"

I am almost 2 months post Ritixubum treatment and I am feeling stronger. But am I 'better'? And how would I measure 'better'?

If you break your leg are you 'better' when the bone heals or when your back to your normal daily activities. If you get the flu are you 'better' when you don't need medication to fight the virus or when you stop sneezing? Most medical professionals follow tried and tested guidelines for the above. They give you 6 weeks for a bone to heal and 7 days to get over the flu. They then expect to see you doing things as you would or they asses for further complications and once again set similar follow-up times and goals.

If I think back to my pre-…

Not good enough: Fears of Motherhood and disability

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Officially a Mom!
On the 28th November 2017 my beautiful son, Levi was born. Ientered this new territory with brave anticipation. As a first-timemom, I knew I would face unknown challenges on this road ahead. Having Myasthenia Gravis would bring its own set of unique twists and turns.

Becoming a mother was always one of my hearts desires. One I often thought may be out of reach. What a blessing it was to find out just a bit more than a year ago we would have a child. Thankfully I have had a community of woman who have guided and showed me what it means not only to be a good mother but one led by God.
Though this process I have realised that my mother, grandmother, aunt and mother in law are the four pillars of 'what it means to be a mom' to me.Because of them, I know how to persevere through sleepless nights, have the lion heart of fighting for my child's needs, how to be quite in a storm and how to have fun, laugh and enjoy every moment given in God’s grace.

But there is a g…

Solving Toileting needs at home

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Solving Toileting needs at home

It is one of our basic needs. When it becomes a difficult or impossible task it can play havoc with your independence, privacy and self-esteem.  Here are some tips that have helped me to keep the personal things personal.
Having difficulty standing up from the toilet is often the first indications for me a flare is on its way. I sit down only to find that standing is now out of the question. The first time this happened I dissolved into a puddle of tears, calling my husband to come rescue me.
Solutions: 1) The height of the toilet.


While you are able to purchase toilets that are slightly higher off the ground than average, unless you're installing a new bathroom this may not be an option. Rather buy a raised toilet seat. This will limit the amount of effort required by the large muscles in your legs to stand. If you have children at home you can also remove the raised seat to allow them easy access. Make sure that it sits securely on your toilet seat. …

3rd Trimester of Pregnancy and MG

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I can not believe how time has flown by since we first found out we were expecting. At times it still feels like a foreign concept as we await the arrival of our little boy.

For me, the 3rd trimester felt a bit like a 'hurry up and wait' game. At times, there seemed to be too many pressures, classes, appointments and nesting to attend to but all I could really do was be prepared-ish and wait.

Here are some tips I picked up during this time:

A squeeze until the end

As baby takes up more and more room your lung capacity is decreased. Make sure to monitor your breathing and be assertive with your PHC when it is more than being 'pregnant and out of breath' and rather MG related.

With this squeeze indigestion and acid reflux often increases. Thankfully most over the counter antacid liquids, like Gaviscon, are safe for MG mommies. Make sure to double check your brand.

The baby shower 

For me, this could only be described as 'A coming together of supportive woman to bless o…

Second Trimester with Myasthenia Gravis

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The second trimester is typically said to be the best time of your pregnancy. For me and my growing belly, I have to agree. With nausea settling and my bump actually starting to be visible, here are some of my second trimester highlights and advice for MG mommies.

Appointments:

The Gynecologist was very insistent on seeing me every month as to monitor baby and my progress. While at times this seemed excessive it was always worth the sneak peek at our baby and to know that all was well. Our 20-week scan was at a specialized fetal assessment center for an in-depth evaluation. Currently, there are no known side effects of the medication I am on or having MG per say on the baby therefore this was to clarify any abnormailites.

When going for any tests relating to abnormalities in your baby it is best to have an idea about what your decision would be if that test comes back positive. This also means that if you are placed in a high-risk category for anything you can decide if you want furthe…

Shower hour - personal care management for MG warriors

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Shower hour! .

As evening approaches so can the fearful thoughts: 'Do I have enough energy to shower, without putting myself in danger?' 'Can I do it myself or do I once again need to ask for help?'


Here are some of my tips and tricks for personal care management for MG warriors and those suffering from fatigue.

1) Choose the right time for you

Some of us have more energy in the morning and feel somewhat recharged when we wake. Personally, I struggle to get up in the morning and the thought of still having to shower, especially on a cold morning puts me off even more. I choose to shower at night to avoid the race against the clock in the morning. As showering can be very tiring, I can also safely rest after completing this task.

2) Have the right equipment in your shower 

- Handles/ Grab rails: Most showers are not equipt for persons with disabilities. Extra handles are cheap and easy to install. I have purchased some from the local pharmacy that sucks to the wall. This…

Myasthenia Gravis and Dogs

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1)Can you tell us a bit about Bailey?
Bailey is now 6 years old (born 7 March 2011). She is a Saint Bernard. She is very sweet-natured, very protective and a very sensitive soul. She is very intuitive of emotion and can feel when one of us needs comforting. But just as with humans, the cortisone can make her a bit irritated. She LOVES cheese and plain yoghurt to the point of addiction, and of course any attention.
2)When did you first notice her symptoms? 
We noticed the first symptoms a few weeks after Bailey got spayed. She has Acquired MG that was triggered by the anesthetic used during the operation. She was 1 year old. Her hind legs just started to give way and she couldn't stand up anymore. This slowly escalated to her front legs also until she was paralysed in all four legs. By then we took her to the Vet a couple of times already to try and diagnose. They came up with anything from hip dysplasia to a broken pelvis. We then took her to Bryanston Vet Hospital, where they have a…