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.|
|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|
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.