Through a mother's eyes....

I asked my mum to explain what it has been like for her since my diagnosis - a reminder that a chronic disease doesn't just affect the person diagnosed, but also the circle of support around them.

This lady gave me life, is my rock & my best friend.

I couldn't have wished for better!

Meg’s Myasthenia Gravis- a mother’s point of view.

On the 16 May 1988 a very special and much awaited baby was born to Robyn and the late Antony Couchman. Yes, Meg’s dad passed away just 6 weeks before her birth. She was a delightful, easy baby- discounting the bouts of colic!!

When Megs was three we moved to a boarding school, where she quickly endeared herself to the staff and girls. She loved her fairies and spent hours making gardens for them. She was generally a very healthy little girl who had none of the childhood illnesses. She loved school and excelled academically. Half way through her grade 9 year, I realized that it was time for me to seek new pastures. However, something was wrong! Megs said she was battling to swallow and after taking her to a doctor who told me she had “Globus hysterics” which was like a psychological eating disorder. 

A psychologist suggested that I take Megs to a neurologist and mentioned Judy Green. I wondered if the stress of a move to a new home had caused this. Once we were in Durban we took the first appointment available. In the meantime her symptoms got progressively worse, to the point that she could not swallow her own saliva, she was battling to speak normally and her eyes never shut. I was desperate who could I turn to? Have I left it too late? I felt guilty because I may have caused this illness.

Judy was wonderful and diagnosed Megs with Myasthenia Gravis within minutes of seeing her. One of the questions Judy asked; had Megs ever had a Hepatitis vaccine!! Yes, she had and I had taken her for this, because she had come in contact with one of the staff members who had hepatitis and it was suggested that Megs had the vaccine. I felt so guilty for having done this.

Megs had her first tablet for MG within hours of seeing Judy- they had to crush the tablet and mix it with water and squirt in small amounts at a time. I think it took 3 hours to have one tablet, because she could not swallow. But she did have a positive reaction.

Katie, Megs older sister has been a wonderful support and even spent the night in hospital with Megs before she had her thymectomy. What can one do when you see your baby child attached to all sorts of machines, that beep and click; lights flicker and your child battling to wake up. There have been occasions when she has battled with her breathing and had to rush off to hospital for oxygen. Times where the incorrect line has been put up for plasma and the correct one refitted. You cannot cry in front of your child- you have to be strong as you are their support, but your heart is breaking.

I can’t tell you how many times Megs has been in hospital for different procedures and every time she goes in, my heart beats in my throat and my heart pounds– I know she has to be in hospital, so that she can get better, but the pain she has to go through when they insert the line for plasma. She never complains, instead she looks forward to seeing her other mother, ”Judy” , Marge and Margaret and her nurse friends- who all know her and spend time talking to her. I just wish I could take the pain away and know that she is going to come through each hospital stay with flying colours.

It has not been an easy road as a single parent, but I have some very supportive family and friends. However, there are many people who have passed some very negative comments, some thinking that this is “all in Megs mind”. I often wish that they would have to endure just one week of what Megs goes through- perhaps then they would have a better understanding and be more compassionate.

An unexpected addition

When I finally moved to Jo'burg to be with husband, (the short story is that I was not coping health-wise anymore, & could not even make it through a full day of work without feeling like I was going to pass out driving home & so came to our new home earlier than expected.  I was worse than I have been in years & was terrified of hitting full-blown crisis & thus being separated from my husband for even longer.) I had an appointment with my new neurologist in order to discuss our plan going forward.

She examined me after discussing all my previous medical history & treatments; & said weakness of my facial muscles is pronounced, with my talking very nasal & my uvula not moving at all.  I could not get off the floor without assistance; could not hold my head up against any resistance; my eyes do not close; i couldn't hold up my arms for any amount of time & I was absolutely exhausted.  She was concerned at just how bad I was & sent me for a battery of tests to see if we can get any further answers.

Straight away I went to have blood tests to check my antibody levels; liver function & all sorts of other things - they drew 10 vials of blood in total (yes, I almost passed out & had to sit quietly once they had finished - I am still a huge wimp when it comes to needles).
I then had to go for a CT scan of my chest in order for them to check if my thymoma had come back (I had my thymus gland removed 2 months after I was diagnosed, but if they had left anything behind, this can grow back & cause further antibodies to be produced).  With a CT scan you have to lie very still - you have to hold your breath whilst they are taking the "pictures" so that nothing moves.  They run a drip of dye in that helps them to see everything more clearly - this drip makes you feel warm all over; gives you a metallic taste & makes you feel like you have wet your pants.  Not something they always warn you about so it can give you a bit of a fright!

In my sexy hospital gown waiting for my CT scan

The doctor & I discussed our plan going forward to try get me back to some form of normality & hopefully give me some enjoyment of life.  She has decided that I need to have a permcath inserted as I will need to go for multiple sessions of plasmapheresis & I cannot always have a temporary line inserted - this has become very painful & I have extreme scar tissue build up on the inside that makes it more dangerous & difficult for the doctors.  I will not be able to work for probably the next year due to all my treatment, & the fact that I will be in hospital for at least a week at a time for my plasma sessions.  This places huge financial strain on my husband who now has to carry both of us, & this stresses me out a bit.  However, my CT scan came back clear which is fantastic news!

I was admitted last week Thursday & taken to theatre - right before I went under they were still discussing if they were sure they wanted to insert the perm cath as my MG was really misbehaving, & I am already a risk going under anaesthetic.  We didn't want to take any unnecessary chances!  However, the necessity of getting my strength up outweighed the risks & after a quick prayer I was told to count backwards from 10; & the next thing I knew I was in recovery coughing out the pipe that was down my throat.

The ladies taking care of me in recovery were lovely & took such good care of me.  They stick this amazing pipe under the blanket that blows hot air on you so you feel toasty warm!  They came to take x-rays of my pipe to make sure everything was in the right place, & then I was taken to High Care (where husband was patiently waiting!) where I would spend the next couple of days for my plasmapheresis sessions.

An illustration showing what was done to me & how the pipes work

I had no idea what I looked like, or how much was actually sticking out of me.  I had acted like an ostrich with my head in the sand beforehand & didn't research anything - in fact I thought I was having a little port fitted like what chemotherapy patients have done.  So I got quite a shock when I had a look down & saw all these plasters & 2 pipes coming out of my boob area!

During my very first plasma session after having the permcath inserted

I was very sore that first day & didn't want to move too much - luckily the anaesthetic kept me quite sleepy & the pain killers pretty much knocked me out after that had worn off!  I didn't try be a hero & cope without pain killers as I have learnt my lesson from this before.

The next day I could already smile!  One treatment down & I felt like a new woman!

The top plaster is where they went in - they feed the tubes from here into my heart, & then use a guide wire to feed the tubing under my skin & out a little lower down to attach the outer connections to.

Showing all placement - excuse the heart monitors but these are a necessary fashion accessory in High Care!  You can see some of the bruising already coming out.

After 2 sessions of plex (plasma exchange) I could already feel a huge difference.  For the first time this year pretty much I was able to swallow my supper without choking & wasn't having to toss my head with every mouthful.  The doctors were super chuffed with my improvement & decided I would have 6 sessions this time around & then I would come back in 3 weeks for another 6 sessions.  Having them closer together will help to remove all traces of my antibodies before my body stores up too many again & hopefully I won't head towards crisis again!

I was so lucky to meet a fellow Myasthenic who I have been chatting with online & is in a support group.  She has always been such a sweetheart, so positive & always encouraging.  In fact she was the one who recommended my new neurologist & made me feel safe about starting with someone new.  Dyanne  was admitted into the bed next door to me for her rounds of plasma & it was such a treat finally being able to meet face to face.  She had had a really long journey to receiving her diagnosis & had initially been misdiagnosed with all sorts of other diseases before her drooping eye gave the doctor her "aha" moment that this is MG.  It was so lovely meeting another snowflake & having someone I could talk to, knowing that I was completely understood & wasn't being judged.  We laughed together, bonded over our new book (both of us had bought "Harry Potter & The Cursed Child" to hospital with us to take our mind off things) & just chatted about life in general.  I am truly blessed to have made a new friend, & know that we would probably not have met were it not for our MG!

Dyanne & me showing off our ports!

The doctors & nurses couldn't believe the difference in my talking, swallowing & general strength after a few sessions of plasmapheresis.  I had some special friends come to visit me in hospital & they commented on how they couldn't believe it was the same person!  It always makes me feel so good hearing that other people are seeing a difference in me & when they can get excited with me.
The only thing that frustrates me is when certain people make out I am so much worse than I actually am in order to make use of the sympathy card for themselves; or when they tell my family outrageous stories that aren't true,but make it sound even more exciting - not cool guys.  I don't need any more drama/spice added to my health issues thank you very much :)

I was discharged & am now at home relaxing, taking things easy, but also loving the fact that I can crochet again & have a bit more energy to cope with life in general.  My bruising has come out a bit more since being at home & is now a beautiful dark purple (thanks cortisone for making this look even more dramatic!)

The bruise starting to come out a bit more

The pipe you can see under my skin.

These pipes can stay in for the next 2 years if I take care of them properly.  I am not allowed to get anything wet & have to go for a dressing change once a week where they will properly clean everything, flush out my pipes & replace the waterproof dressing (oh, did I mention that I have developed an allergy to this plaster, but just have to suck it up as there is no alternative!).  Showering is rather tricky & I am trying to figure out how I can wash my hair without getting any water down my chest, but I am sure that over time this will be something I can do without any stress.  I also can't wear a bra as my pipes are just in the wrong place & I can't risk moving them by having a bra rubbing against them throughout the day (#freethenipple was not something I ever thought I would be supporting!).  These are just a small price to pay to feel like I do & to have the quality of life I do right now compared to only a week ago.

Appreciate your health & never take for granted the miracle that your body is in its constant functioning.  It is only when things go wrong that you begin to realise how amazing the human body truly is!

Moon Face

One of the joys of having an autoimmune disease, is that you are more often than not put onto an immune suppressant drug.  One that will help your body stop attacking itself, but will also leave you susceptible to every little germ that comes your way.  This is why I try to stay away from large crowds, & often don't visit friends when they are ill.  It is not for lack of caring, but rather for fear of being bed-bound after a quick chat.

One of the medicines I have been put onto is called Prednisone (a type of cortisone).

These small white tablets are very deceiving!  They don't look like much, but boy do they come with a list of side-effects.

Long-term use of steroids may lead to bone loss (osteoporosis), especially if you smoke, if you do not exercise, if you do not get enough vitamin D or calcium in your diet, or if you have a family history of osteoporosis.

Others include:

• stretchmarks & scarring (due to thinning of skin)

• sleep problems (insomnia), mood changes;
• increased appetite, gradual weight gain;
• acne, increased sweating, dry skin, thinning skin, bruising or discoloration;
• slow wound healing;
• headache, dizziness, spinning sensation;
• nausea, stomach pain, bloating; or
• changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).

But, the positives often outweigh the negatives.  Being on prednisone seems to have given me strength again & helped get my MG under control.  However it has ruined my self-confidence (not that I had much to begin with).  I was never one of the popular kids, or one with lots of friends.  I never had guys after me, & I have never felt "beautiful".  I have never felt like I have fitted in anywhere, & have constantly felt like an outsider looking in on everyone else enjoying life.  This has allowed me to grow internally, & to try to be the best possible person I can be mentally & emotionally.  I still feel like the odd one out, & get very embarrassed walking into a busy room (even if it is full of people I know).  Add to that a "moon-face", pimples, & now my pipes sticking out of my chest; & I often wonder if it wouldn't be easier to remain a hermit??

However, I will not give up & I will not allow my insecurities to get the better of me.
I won't be on prednisone forever, & if it is saving my life then all these horrid side-effects are worth it.

Looking back over photos of the last 12 years, where I have been on varying amounts of prednisone have shown a huge difference in my face shape & size.

At my 21st with my fabulous neurologist - I was very bad at this stage MG-wise & could not even smile.

Last year when I wasn't on any prednisone.

Current moon face.  This is the most difficult photo to have to put up as I feel disgusting.  I have probably deleted it & re-posted it about 5 times.

I will get healthy, & I will get my self-confidence back!