Acceptance

My last blog was a very long time ago...  There has been so much happening & we have been trying to process it all before we let everyone in on it.  My emotions have been all over the place, & I think (thanks to a friend for pointing this out!) that I hadn't fully accepted what has happened.

It has been an extremely busy year so let me quickly try summarize what has been going on - otherwise you could be here all day reading my story & I think that will drive you mad!

I am still going into hospital to plasmapheresis - we have realised that this is what is keeping me going & unfortunately my health has declined to the point where I spend only 2 weeks at home before needing to be admitted for 4-5 days of plex.  The effects of the plasmapheresis only last for 4 days before I start declining again, & then I battle for as long as possible before needing to be admitted.  I am now making use of a walking stick to help me keep my balance & take some of the unnecessary stress off my body when I go out in public.  I am exhausted constantly - from fighting my body, from putting on a happy face & from the emotional turmoil that I have been through (more on that later).  I have been on 4 different immune suppressant drugs over the past year & a bit to try control my MG, but unfortunately these are not working.  Methotrexate, CellCept, Azathioprine & Cyclosporin are just not making a difference.  I am on 4 different other medicines on top of these as well - each with their own array of side effects.
Before I used to come in for plasma once a year (as a maintenance treatment - think of it as changing my batteries to keep me running for another year), & now I am coming in after a fortnight (my cup has a hole in it, causing my health to leak out - the plasma is replenishing the liquid in the cup, but we are in a constant battle to try fill it up & cannot find the "leak" or how to clog it up).

Feeling grim & unable to smile.

 My darling precious granny passed away earlier this year,  It was the absolute worst thing I experienced.  Gogo was so much more than just my granny, & being away from my family at this time was extremely difficult.  She passed away in her sleep, but was battling for some time with her body slowing down & her memory falling away.  I miss her every single day, & often find myself picking up my phone to give her a ring & let her know what has been happening.  She truly "got" me & could always make me smile when I was having a down day.  I am so lucky to have had her as such a big part of my life for so long, but it doesn't make things any easier. The stress of losing her definitely affected my health, & I was admitted for emergency treatment just after her passing to try lift me out again.

With Gogo at our wedding

Together with the cousins at Gogo's memorial - bright colours for our precious granny.

Husband & I have been trying to still live our lives & suck the marrow out of it whenever possible.  This isn't always easy - especially with my health as it is.  We cannot make plans for more than a week away, as we don't know what will happen with my health or when I will relapse again.  We cannot travel too far from the hospital & need to be constantly aware of my abilities.  One braai out with friends means almost 16 hours of sleep to try recover - and paying for it for the next week.  We have amazing friends that truly understand this & take such good care of us - having husband over when I am in hospital & constantly checking up on me to make sure I am behaving!!

I was blessed to go to Barcelona, Spain for the EURORDIS Summer School on Patient Advocacy & Clinical Trials with my job for Rare Diseases SA.  What an amazing opportunity!  I met the most amazing people & came back with so much knowledge & excitement for the future.  We also managed to squeeze in some sightseeing as this was my first trip to Europe, & I really felt truly blessed.  The doctors did 4 rounds of plasma before I left so I was strong for my trip & could properly enjoy it without missing out on too much.  I did go for naps every lunchtime & pressed snooze on my alarm more often than I should have, but otherwise it was even more I could dream of.  I did choke on my food occasionally; missed out on meals as I couldn't swallow; & kept quiet more than I wanted to as talking was too much of an effort - but my heart was happy & I was determined to not let my health make me miss out on this experience of a lifetime.

With Helen from Genetic Alliance

Being a proper tourist

After our time in Spain, I stopped off to see my sister in England.  Katie is my best friend & biggest supporter - being away from her is so difficult & we talk almost every day on FaceTime.  Because I was so close to her, I couldn't miss out on an opportunity to spend time with her & get to see their everyday life.  I was spoilt rotten & it was such special bonding time.  We got to chat, cuddle, catch up properly & see so much!  I noticed myself declining during this time, & was napping for about 3 hours every day.  It was horrid missing out on time for her because my body was letting me down.

My life is enriched by this beautiful sister

Proper High Tea

And now, on to the real point of this blog...

This is so difficult for me to write, & this is why I have avoided writing anything for so long.

We have been through the stages of Grief:

1.  Denial  (This can't be real!)

2. Anger  (Why me?  This just isn't fair)

3. Bargaining  (If I get better, I won't take my life for granted; & all the "what-ifs")

4. Depression  (I didn't want to leave the house, & cried for anything)

5. Acceptance  (I am still trying to get here - but its getting better)

We have spoken to many doctors & they have met with each other to discuss my case.  This is the cold, hard truth.  We have not really sat & thought about what this means for us, until this most recent relapse.

The doctors have now said that they do not have a plan for me, & there is nothing else they can do for me.  

We were really praying that the newest medication would make a difference in my life, but I am slipping further back every time.  My relapses are coming quicker & closer together, with it now affecting my breathing.  My MG has officially progressed to the brittle, refractory form & what used to work for me no longer does.  I am in a constant fight against myself & it is absolutely exhausting.

Trying to stay positive!

We are not giving up hope, nor are we just being negative,  We are being realistic, & trying to find ways to make my lives easier to try take some of the stress off my body - hence the walking stick, having a snooze every day & listening to when my body says - woah, ok that's enough!

For so long I have tried to push it to the back of my mind & not allowed myself to "think myself sick".  But we have been told we need to face up to reality.  The longer I have my Hickman Line in, the fewer options I have.  They are concerned that soon I could become immune to this treatment, & it will not make such a big difference to my health.  Plex/plasmapheresis is what is keeping me alive.

Before coming in for this treatment, these were my symptoms:

I was unable to get off the floor; battling to swallow right from breakfast; slurring my words; unable to pick anything up from the cupboards; unable to reach for anything above my head; unable to hold my head up when bending forward; drooling constantly; unable to give husband/our animals a little kiss; I battled to breathe when lying flat on my back; I had to rest after having a shower & just felt completely drained.  I just cried constantly.

Just starting my third Plasmapheresis in this round of treatment

I am going to see a specialist in Cape Town early next month to see if she has any advice or ideas of what we could do.  My doctors here have been communicating with her, but we have decided that it would be best to actually meet with her in person so she can test my muscle strength herself.

We do not know if we will get any more answers, or if she will have a plan.  This could be the time to try make my life as comfortable as possible; or it could be something completely off the grid that she thinks of that could work.

We are not giving up hope of a miracle, but we are also acutely aware that there may not be a way forward for my Myasthenia Gravis treatment.

My heart is heavy, & writing this blog is extremely difficult.  I don't like to face up to this reality, & never, ever want to be seen as being negative.  Being positive & seeing the good in life has got me through so much.

Please stand with us in prayer.  

We need a miracle.

Under the effects

Yesterday I was re-admitted into hospital to have a new permcath fitted (it was taken out last month after it was constantly blocking during treatment & giving me all sorts of hassles - let me tell you, being free of it for a whole month was better than I could have ever expected!) & a fistula for future treatments.

We were at hospital bright & early, & did my admission so they could start prepping me for surgery.  The idea of going under anaesthetic is never something I look forward to.  With Myasthenia Gravis your muscles are already so weak, that going under & getting certain muscles relaxants causes huge stress to the body & it can be fatal. So even though it is just a small operation, I always start to panic when I know what is coming.  I signed all the necessary forms then waited - and waited.  I was starting to get hangry (angry from the hunger, as the last meal I ate was 7pm the evening before!) & the longer I lay there the more my thoughts started going crazy.

Eventually they wheeled me into theatre at about 1pm & started scanning my veins to see where they could insert the fistula.  It was not good news.  My veins are so tiny & run away the moment I come into hospital so the vascular surgeon said it is impossible to do a fistula as my veins wouldn't hold.  The vascular surgeon scanned both arms & even in my neck but none wanted to participate.  The anaethetist even said I have baby veins & took about 15 minutes just to find a vein that she could put the drip up into.  But, she got one in eventually!

I woke up after the op feeling good & my permcath in with no complications.

They have inserted it more along the side of my chest, rather than down the centre. So movement is a lot easier & the only real pain I am battling with is in my neck.  I think the surgeons are a lot more rough on us when we are under anaesthetic than we realise.  Plus this is the original incision site & where they insert the pipes so its expected to be sore!

My doctor who oversees my plasmapheresis came to see me & she said she hasn't seen me this good in ages, so it actually looks like everything is working now!  She was ok with the fact that they couldn't do the fistula as we are now hoping I won't need this on such a long-term basis.  Wouldn't that be great??  So this permcath will stay in for another 3-4 treatments & we will reassess to see if we think I should get a fistula fitted, or just come in every couple of months for a 'top-up'.

For now though, I would like you to meet my new friend...

Every day I now have to squeeze this stress ball - not only to help get rid of any stress I may be fighting, but also to try strengthen my veins & build them up in case I need a fistula to be fitted.  So it really kills two birds with one stone!  Hopefully this will help make it easier to take blood as well, as this is never a pleasant experience.  I'm telling you, my veins know when it is hospital time & go running to their secret fort, only to return once I am home safely...

Be safe, be kind, be strong xxx

I am more than MG

Almost 2 months ago I landed my absolute dream job – helping with administration for Rare Diseases South Africa.  It has relit a fire within me & reminded me about my passion for helping others.  It has woken up my brain (it was starting to turn to mush not doing much at home since July) & really made my heart happy.  I feel like I lost a part of myself over the past few years & was simply floating along doing what society expected of me, & I was allowing others to squash me & my dreams.  I allowed negativity into my life & was more focused on the “sick” part of me, without realising I needed to take care of myself as a whole!

Last week we travelled to Stellenbosch for RareX (an international conference on Rare Diseases – the first of its kind to be held in Africa) & I feel like I really learnt so much.  I met people from all over the world; was privileged to listen to speakers from different areas of the rare disease society; & medical professionals, patients & pharma companies were intermingling without any feeling of “not being good enough”.

  

Our welcome to Spier conference centre

The Rare Diseases SA stand with some of our "Rare Bears"

"Support in a Shoebox" explaining MG in simple terms - of course lots of snowflakes, a spoon, a ragdoll, an explanation of MG, & some of my medicine containers.

Although I pushed through long days, was on my feet for hours & chatted to everyone I could; I was happier than I have been in ages.  Every night we had something going on – dinner with friends, a cocktail party, a gala dinner, or just an evening in the bar.  I made new friends; drank wine; danced like a crazy person & laughed until my stomach & cheeks were sore.  My endorphins were out of control & I finally felt like the old Megs was back!  I allowed myself to have fun instead of just being boring & responsible – as per usual.  It was also so amazing telling people I had Myasthenia Gravis & they knew exactly what I was talking about, & could even offer some advice/encouragement.

Shevaun, Kelly & myself on day 1

 I have realised that for so long I didn’t allow myself to have fun because I was so scared of the after-effects on my health; but also I allowed other people’s unkind words to control what I could & couldn’t do.  I realised people aren’t judging me when I start slurring, & friends will always laugh with me – not at me.  I felt like I was floating throughout my time there, & it has continued since I returned home.

With my new friend, Christina, from Kenya

It was a great reminder that Myasthenia Gravis isn’t all there is to me – I am still Megan Toni & I need to take care of all aspects of myself.  It is important to still have fun.  Take time to rest & take care of yourself; but still nurture every other part of yourself – emotionally, mentally & physically.  Make your heart happy; tell jokes; feel free to make a fool of yourself; don’t allow yourself to become a ‘plank’; laugh as often as you can; & make new friends wherever you are.  This will all help bring out the part of yourself that may have completely disappeared over the years of being chronically ill!

Chronically Ill

As I write this, I am lying in my hospital bed - for the third time in under 3 months.  And let me tell you, it doesn't get any easier no matter how often you come to hospital.  I still get butterflies in my tummy when I know I am coming here & dread the idea of more time away from "normality".  I am back for more plasmapheresis, & although I love feeling so much stronger, I HATE having to be admitted again & the fact that I cannot function as a normal person.

When you first get diagnosed with a chronic illness & have to go to hospital; you get visitors every day - flowers, cards, messages & phone calls.  After a while these begin to dwindle (understandable as it seems to be a frequent occurrence) & after 12 years it is pretty much non-existent.  We don't expect people to fawn over us & act like we are dying every time we have to be admitted, but please do understand that coming to hospital is never something we would choose to do.  It is not a fun place to be.  We know what is going to happen & the pain that will most probably accompany our stay.  We know what it is like to be away from our family & friends; & we still get nervous about coming in. It hurts when family/friends seem blase about our time in hospital or almost don't care.  The days & nights are long here, & every little message or phone call means more than you could ever imagine.  You may not get a response from us straight away, but it gives us renewed hope & our heart becomes slightly fuller thanks to your love & concern.

Being chronically ill means you still try to function as a 'normal' person, & then pay the price for it later.  Our lives have been changed forever & 'normal' for us is now numerous doctors visits; blood tests (& knowing which vein they should use!); finger pricks; & permanent ports.
It means calling your doctor by her first name & having her cell phone number stored for any emergencies; it means knowing more medical terms than some nurses; & it means hours of research into treatment options overseas.
Being chronically ill means you are covered in scars - each one a reminder of a battle you have fought & won.  It means you have had to grow up before your time, but still enjoy acting like a foll every so often.
Having a chronic illness means walking into High Care & having the nurses know you by name; it means never being able to leave the house without your medicine; it means planning for a night away to ensure you are covered in case of any emergency & have the necessary drugs.
Having a chronic illness means your medical savings are finished at least half way through the year - and that's if you have had a good, healthy year!  It also means the pharmacist knowing you by your name & having your medicine ready for you when it is time for your script to be refilled.
Being chronically ill means you have had pipes & tubes inserted into your body to help you function; it means the side effects of your meds leads to you needing to take more medicine; & it means you can't simply take over the counter medication without researching it thoroughly.
Being chronically ill means you most probably know how to connect your own heart monitors by now & can probably even attach your own blood pressure cuff  without a nurse's assistance.
Being chronically ill means you have probably missed your own birthday party; it means you have probably slept through a Christmas lunch with the family & it means you have been called rude at least once in your life - even by your own family.  It means owning more pajamas than normal clothing; & still getting excited when you get given more.
Having a chronic illness means you have to learn to be strong & understand that hurtful words more often than not come from a place of naivety & lack of knowledge.  You will learn that certain people always think that they know better - let them.


It means you know how to smile when all you want to do is cry.  It means you keep your brave face on until you can be alone & let the tears simply flow.  It means you never give up.  No matter what.

Fighting every day to stay alive is not easy & of course there are moments where all you want to do is give up.  Never lose hope.  Surround yourself with happy, supportive people.  And know that you are a warrior.  And you are amazing.

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!