I do apologise... I haven't been around for a while. Life seems to have been on fast forward, with hardly any time to just sit down & relax. Work has been hectic with month end reconciliations & trying to make sure we get out statements in time. I have been working & getting home to just BLOB in front of my tv with my new puppy cuddled on my lap. Thank goodness my husband is so understanding & gets home from a very busy day to cook us dinner & take care of me!
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| Lola - my precious pup |
My MG seems to be under control lately - I know I am not getting any worse, even if I am not quite 'normal' just yet. My facial muscles are 'melting' by the end of the day (best way I can think if to describe it - they seem to have met their match with gravity & don't want to lift up to smile or anything) & I do slur my words slightly; but I am not feeling as weak throughout my body & I can still cope with what is happening. I have learnt to take things easy & am not pushing myself as much as I was previously. No more late nights, no more going out after work to all sorts of places, no more hectic weekends going to visit 10 different people, no more thinking I am superwoman. I have learnt my limits (thanks MG) & now have to stick within them. I often feel like a boring old lady, but I have realised that my health is more important than a late night! Friends & family are very understanding; & we make plans for convenient times. They are also understanding if I cancel plans at the last minute - I definitely don't mean to but sometimes my body tells me I cannot carry on!
I went for a check-up with my neurologist on Thursday. She is happy with my progress after my last visit (a month ago, where my medicine was increased from 4 tablets a day to 40! Shake, rattle & roll baby...) & said we could try decrease my prednisone. I was so relieved to hear this as I am beginning to look like the Oros Man - gotta love the side effects of cortisone, which include an increase in appetite (and yes, its bad. I will eat anything that is not nailed down. I am hungry THE WHOLE TIME. I will finish supper & start looking for my next snack. It's bad.); increase in water retention (hence the "moon-face" I have developed); insomnia (I will be EXHAUSTED, but not able to fall asleep. Or I will fall asleep, but wake up every hour. Yuck.); increase in facial hair (anyone wanting to grow a moustache? Go onto cortisone & one will sprout out of nowhere... It's fantastic. Thanks medicine - I have always wanted to look like a man!!); & thin skin (I bruise from bumping into the door! People must think I live with a wife beater. Let me tell you now that this is most definitely not the case! My husband is the most gentle, loving, amazing man in the world. I am just a clumsy oaf! It also means that I should not have a wax as it can remove my skin, as well as cause terrible bruising. But I do it. I have the
best beauty therapist ever. You should try them.) Anyways, back to my medicine... I was so relieved to have the drop in my cortisone. We are going to see how I cope during this next month, & at my next check-up reevaluate & perhaps stop it completely (when I am better), or have to increase it again (if it happens that my body is not coping on the lower dose).
The other medicine I am on is CellCept. This is not a pleasant pill.
This pill is deciding for us that we cannot start a family until it is stopped. I am the reason that we cannot have kids. Growing up when people asked me what I wanted to be when I was big, my answer would always be the same - a mum. This may be due to the fact that my mum is the most amazing, strong woman; but a huge part of it is also that I love kids & I can't wait to have my own little family. It is not worth even risking falling pregnant. There is a 70% increase in the chance of miscarriage, & it is almost guaranteed there will be birth defects. I have heard that you cannot even breastfeed whilst on CellCept! This has been the biggest blow to me ever. I have shed many tears, & often cannot face the world with this on my mind. My neuro has suggested we look into surrogacy or adoption - I don't even know where to begin. Also how to you ask someone to be a surrogate? "Sorry, would you mind carrying our child for 9 months, coping with morning sickness & more stretch marks, feeling it moving & growing inside you, & then handing it over to us quite happily?" Also I want to be pregnant! I want to feel my child moving & growing. I want to go through morning sickness. I want to experience pregnancy for myself, & not just through stories told by other women. I know this may sound selfish of me, but it is my dream. I would love to adopt a little baby, but I still want a child that is a mini-us.
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| Me with my grandpa when I was little |
And lately it seems like everyone around me is pregnant or just had a baby. I am thrilled for them - especially one special couple that has had a really rough time last year. All these people deserve kids & I am so happy that they get to be parents. But I have to admit that this little green monster still comes out & I shed a few tears every time I hear of another one. Maybe it is because I know we can't have kids right now that I notice it more, but wowzers, it is not easy! Also people keep asking us when we are going to have kids. Once you are in a relationship, there seems to be questions with the rest of your life; i.e. "When are you getting engaged?", then goes to "When are you getting married?", which ends up at "When are you having kids?". How do I explain to others that I have a potentially life-threatening illness & am on chronic medication that hinders my ability to have kids? Do I say it just like that & shock them into silence? Or do I try give a long explanation? Or do I lie & say we want to wait until we're a bit older? People don't necessarily realise how much their questions can hurt. I know they don't mean them to, but more often than not people who don't have kids haven't had them for a reason.
Now, it is just a matter of getting better so I can go off the medicine again. A professor of neurology that my doctor has been consulting with says he wants me on CellCept for life. This is shocking news. And I don't want to believe it. I
will not believe it. God has a bigger & better plan for us. We cannot see it right now, & don't understand the reasoning behind having to go through this. But one day we will look back & understand - hopefully!
Thank you for all your understanding & patience with me through this difficult time. And thank you for not asking me when we are going to have children of our own - when it happens believe me I will be shouting it from the rooftops & celebrating every day.
Much love & happiness to all of you xxx
