Part 2: MS, Pregnancy and Fertility

Fertility and Pregnancy Part 2

One of my exes told me when we broke up that she pitied me- no-one would want to be with anyone with MS. For a long time, that got under my skin and I believed her as it fit with my sense of worth (pitiful) and there was no choice. Then I met Cathy and everything changed. We romanced, fell in love and started planning for a child. We did it the typical lesbian way- clinic, donor and with medical intervention. Last September, she got pregnant and we’ve had a roller-coaster of a year. It was a good pregnancy, healthy, not too much sickness and with so many happy times. The months passed with scans of the baby growing, consultant visits and the waiting… and waiting.

Then the 17th of May in the early hours of a quiet Sunday morning, our baby girl arrived. Cathy stayed in hospital for three nights, learning how to breastfeed, resting and getting to know the new arrival. I prepared our home, hardly sleeping as the two loves of my life slept in a hospital across town. On a bright sunny morning, I drove to the hospital. We nervously put Baby into her snow-suit, packed the car seat and drove them home.

Cathy would say pregnancy is easy. It is when baby comes home that you will never be prepared for. My friend described becoming a parent, having a new-born in the house, as the equivalent of throwing a grenade into a relationship. The explosions rip through what you thought you knew about yourself, your partner, your family and friends. Some relationships collapse, only to grow renewed and stronger, while others fall away never to be renewed. MS and children also collapse TIME; we’re forced to be present, to be in the moment, to mindfully breathe every breath. Time slows down and speeds up, all at once!

As the first two hellish weeks fade in my memory, as my brain stops hurting from all new pathways built during those first few months of intensive learning, I see how MS was put to the back of my mind. My concerns faded as the jobs that needed to be done, got done. In the months since I’ve learned how to change a nappy in record time, how to interpret a baby’s cry, make the meals that are super nutritious and quick (or pop to the local fast food restaurant in desperation for a meal!), do the housework, be mindful, take rest when I could and make it to my TRX/Kettle bell class whenever I can.

Last Christmas we had the Rogan Nativity play in my aunt Clare’s house. It’s our tradition, when we meet for food and drinks and all my cousins, aunts and uncles dress up as shepherds, angels, Mary and Joseph and baby Jesus and the donkey. We play our parts while someone reads the Nativity story from the Bible. At the end of the fun, we give thanks for being together, gratitude for family, the universe we live in and for the gifts we have. It is also an opportunity to share news. This year I decided to share my happy news about the pregnancy, only I got overwhelmed and upset. Eventually, I blurted out the news. There was stillness…then an eruption of laughing and cheering. Afterwards, one of my aunts hugged me and told me how happy she was. Because I had cried, she too cried. She thought that the MS was getting worse and I was about to tell them bad news….

Thalia is now four months old and we have great fun together with a joy like I’ve never known. Having a loving partner and becoming a parent has unfolded a life-long love letter to what is our precious existence. Finally, I see how choosing to leave a bad relationship allowed me to move on to something precious and true.

My pregnancy journey was from a partner’s perspective and I’d really like to know how it has been for you? Please comment or connect on Twitter @emmadragon

© Emma Rogan 2015

Part 1: MS, Pregnancy and Fertility

This blog was first published on the MS and Me blog from MS Ireland

Part 1 of 2

Did you ever dream of becoming an astronaut, a pilot, a parent, a dentist, a doctor, a diver or a Formula 1 driver? It was these fantastical, panicky thoughts that came rushing through on D-Day (Diagnosis Day). Illogical yet perfectly human – my mind was firing off in all directions with the news. A state of want, of loss, of abandonment came rushing in. Amongst the ‘what-might-be’’ was ‘what about children?’ even if they weren’t on my radar at the time

Many Irish people don’t go through a lot of thinking about how they’re going to have children; we move through adulthood, perhaps meeting someone, setting up home together and then children follow. But if children are not an option without assistance (gay/lesbian/low fertility) or there are issues, it is then we wake up. We learn about AMH, the sperm count, choosing a donor, counting cycles, the disappointment of missing a cycle, of getting your period, or the heart-break of miscarriage. Or not. Many people have decided they want to be child-free with others who just didn’t have the opportunity or it was never the right time.

The challenges: 

• If you’re on them, you’ll have to come off Disease Modifying Therapies (DMTs) and other medications in plenty of time before becoming pregnant. Do not use them when breast-feeding. Aubagio, Avonex, Betaseron, Copaxone, Fampyra, Gilenya , Novantrone, Plegridy, Rebif, Tecfidera or Tysabri are not safe in pregnancy. Talk to your neurologist.

• There is risk of foetal abnormality from drugs and medication. If you’re taking DMTs, use contraception if you are having sex.

• There may be some effects on sperm production and count from DMTs and other medications.

• If you’re considering fertility treatment, you need to learn all about the side effects and speak with your neurologist before you start. The ‘stims’ may have an effect on your immune system in ways you don’t realise; the last thing you want is a relapse when in the throes of the fertility journey.

• Other issues for women include muscle weakening of the pelvic area and/or loss of mobility or function, all things that can exacerbate bladder and bowel problems during pregnancy (but are a normal part of being pregnant because of the growing foetus).

For anyone considering having a child or adding more to your family, talk about fertility with your partner, your friends who have MS and children and family. Have your fertility tested; with knowledge you can make informed choices and make decisions based on what’s best for you as well as your partner and your family. Woman or man, do the right things by your body (exercise, a good diet, healthy relationship) and you’ll be giving yourself the best chance at enjoying your own life while trying to create a new one.

The great news is there is absolutely no evidence that a woman’s fertility is affected by MS but there is lots of evidence that confirms pregnancy can be a very good, normal experience. Many women discover the positive biochemical effects of pregnancy (the immune system is suppressed to allow for the foetus to grow inside her body, the increase in good-feeling naturally boosted corticosteroids) and the other natural boosts from the changes in her body means the majority of women with MS have a normal pregnancy. But if there is a lot of disease activity or  if there is loss of function, decisions need more time and planning.

Although the issues are the same for MSers as for other pregnant women keep in mind the additional aspects of having MS. There is a risk of relapses after the birth – as the immune system comes back to normal but there is no evidence that there is long-term disability because of pregnancy. As with the relapse rates, the life-changes that come with having a new-born in our lives is something we can never be prepared for. BUT do build your support networks, have people prepped and ask for help when you need it.

© Emma Rogan 2015

{MS} Whip-cracking Away! 

Did you ever get bad news? Do you remember the few moments when you saw the face of the person who was about to tell you something you didn’t want to hear? Did they stumble/mumble or were they clear as a bell as they rang your reminder of your own mortality? No? Great. Please don’t read on. 

  But if you have had that concrete stomach feeling, if your self-esteem has taken a blow like it’s like nothing ever before you might understand what I’m going to talk about. Being diagnosed with a chronic illness is a blow to our core, to our identity. What we think about ourselves, our place in the world/relationships/work, who we are, the person we want to be, how we ‘feel’ & think are transformed. It is nothing short of a metaphorical tsunami that washes through our world. There is no more of familiar landscape. It is gone.

Multiple sclerosis comes with a whip that can *crack* wherever, whenever. A sudden dart of burning pain, loss of balance, fatigue or lost for words. One of the ways I’ve dealt with these interruptions is by focusing on my own reality and using other ways to avoid ‘catastrophic thinking‘ (turning off those bells!). As humans, uncertainty is something we deal with every day, not only as someone with MS. However, it is the ‘knowing our own vulnerability’ that magnifies our life experiences, good and bad. I’ve had the worst of days/months but have used all sorts of means (NLP, therapy, socialising, public speaking etc) to deconstruct the experiences so I get through in a mind/body healthy. Tap into your own wealth of experiences and use what you know so you can manage your condition. Self-management is the key to a great life.

I’m an avid reader and have found the experiences of others, business/mind leaders and social innovators really useful- there are always tools for me to pick out and use in my day-to-day. 

  • The Impossible Just Takes a Little Longer by Art Berg
  • Full Catastrophe Living by Jon Kabat Zinn (mindfulness)
  • Richard Branson’s autobiographies 
  • Philosophy
  • Idealistic & deep (Ursula Le Guin; Kahlil Gibran; The Book of Psalms; travel books)

Do you like black & white, the sense of control & certainty? ResiStance is futile! MS is as grey as anything and learning to live in the mystery while (also living fiercely) may be a way to ease the stomach-churning pang of uncertainty. Compassion- rage against the what ifs/whys/hows but also know it will be exhausting and destructive if not balanced with enjoying your one and only life. Self-compassion can be restorative and sustaining- check out Dr. Kirstin Neff

As the tsunami waters subside on the diagnosis, it’s okay to say no to people who try to tell you what they think is best for you (especially me!) and to disagree. What I mention I have used/am using in my own life and I hope that some of what I share will be of use to you if not this week, some day in the future as you find the ways that work best for you.

Join me on Twitter to chat and talk through the messy things @emmadragon

Multiple Sclerosis: The First F____ed Fortnight

The early days are the most ‘challenging’ as in it is like a dirty dangerous whirlwind where emotions, words and all sense of self goes whizzing around. The day I walked into Mullingar Accident and Emergency room, I was wearing my jeans and a t-shirt that had seen better days. Two weeks later, not only was that t-shirt gone, the Emma who walked into A&E had disappeared, stepped into a bizarre place of chronic illness and dis-ease.


Multiple sclerosis- multiple scars? I had brain damage? Those fifteen seconds, when those words went from the consultant’s mouth to my ears, a little part of me died… I picked up the pieces of my broken heart but I still think of old Emma sitting on the edge of the hospital bed and the new Emma, getting up and stumbling, in a post-traumatic shock way, into a new life, a new way of being.

My identity, the idea of myself turned upside down and inside out. I was given some vague information about the MS Society as well as some local groups but every day that week with the pieces of my heart rattling round my pocket, I drove myself to hospital, got my meds and drove myself to work. There’s no doubt, it has been raw, it has been ugly with cursing and swearing, lost relationships dodgy decisions. But I everyday I make peace with myself, I give thanks that I have another moment to live. Because there were times when I didn’t see any hope. I was soaked in blood, sweat and the tears of a thousand years.

I didn’t realise it but that was a magical time when the days came and went, health dripped into me in the form of Solu-Medrone and care from the nursing staff. It was also the worst time of my life when I fu*ked, cursed and got angry as hell and contemplated ending it all.

Now, eight years on I’m still here. I was transmogrified not to someone new, but to my authentic self. I never expected to have to talk to strangers about the life I live. But stories are transformative and we humans are wired for narrative and prose. It is when I recognised the power of authenticity, of whole-hearted living that I learned the power of sharing it with others. We can all do this, in good time, and gradually we can positively affect the lives of the people we work with, our partners, wives, husbands, family and friends. Do it daring greatly.

Bishop Paul Colton’s Address to the Diocesan Synod of Cork, Cloyne and Ross, 2015


It was a week filled with delight, worry, anticipation and over-whelming joy. The Yes vote not only changed the politics of Ireland, it has changed the people. Lesbian and gay people are no longer allowed to just get ‘gay civil partnered’. We can now be married, no inverted commas necessary.

Originally posted on Latest News from the Church of Ireland Diocese of Cork, Cloyne and Ross:

United Dioceses of Cork, Cloyne and Ross

Diocesan Synod Address given in Cork

by The Right Rev. Dr Paul Colton,

Bishop of Cork, Cloyne and Ross

6th June 2015


Dear friends in Christ, we meet as a Diocesan Synod in the name of God the Holy Trinity to reflect again on the work of the local Church here in Cork, Cloyne and Ross.

I referred last year to the work of the the Commission on Episcopal Ministry and Structures, and we welcomed two of the Commission’s members to give us a presentation.  Since then the Commission has published its thinking in a more detailed way.  Moreover, at its meeting in May, the General Synod adopted a resolution welcoming the ‘general principles, analysis and approach to diocesan restructuring outlined’ in the Commission’s report; acknowledged ‘the need for structural change’; and requested the Commission to consult with Diocesan Councils’ and…

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World MS Day 2015

The tremendous passion and purpose for marriage equality that poured out across Ireland last week was invigorating. It’s with this same passion and purpose I ask people to join the 2.3 million people across the world and the 8,000 plus people in Ireland with Multiple Sclerosis as we celebrate World MS Day.
There is a young woman being diagnosed today. She’s probably in her late 20s, her prime adult years. She’s told about the damage to her brain, her spine and the central nervous system. There is no cure. Because MS affects the central nervous system, the system that controls everything, MS can cause a huge variety of problems including fatigue, loss of balance, cognitive dysfunction, visual difficulties, depression and other symptoms.
MS is a chronic, neurological condition that fluctuates, so she’ll learn from healthcare practitioners what it might mean long-term but there are no certainties. She’ll search out information online, look to family and friends for support and turn to the groups and organisation that understand what it means to live with a life-long condition. Gradually, she’ll build her resilience and learn how to manage her condition and thrive again. But it is only because there are people she can trust to support her through the worst of days that she will have a chance to have the best of days again.
People with MS are the tip of the iceberg when it comes to brain conditions- there are more than 700,000 people in Ireland with neurological conditions (including Parkinson’s, Huntington’s, Motor Neuron Disease, chronic pain, acquired brain injury, and others) supported by different organisations. The Scheme to Support National Organisations in the Community and Voluntary Sector (SSNO) provides many of these organisations with money to provide services. All neurological organisations that applied, were denied funding ( The Neurological Alliance of Ireland represents those 700,000 people but for the past eight budgets, not for profit organisations that provide the care to people with neurological conditions have had their funding decimated.
We are people with decades to live and huge lives and careers ahead. By investing in neurological services we can ensure that people can be supported to stay well and continue to thrive. We can make the investment and change the course of people’s lives.
It was eight years ago this month when the bottom fell out of my world, the universe gave me a massive shake and I looked around for some sort of guidance in all the madness. Funding needs to be restored so people in Ireland with brain conditions are supported through the worst days of their lives. This matters because it is our brain that makes us who we are and I hope those who make the decisions reconsider. On this World MS Day, I’d like to thank the people across the world who have shown me, no matter how bad things are, l am Stronger than MS.

Our dreams are on their way

Have you seen the posters? Can you ever ‘unsee’ them?? It hasn’t been pleasant what with the homophobes firing their ‘pious reasoning’ like an AK47 blast through Irish society with no care for the collateral damage inflicted.

These posters never were about debate, they are about sending a message. It sounds something like “If you’re straight, great! If your trying to figure yourself and think you might be gay or lesbian or if you’re gay living out, get back in that confining box we’ve spent centuries making specially for you”.

This Friday 22nd is due to be a typical Irish May Day- sunny, cloudy with the potential for lots of rain. We’ll get up, do our morning things, head out to work or stay home or go to college or do what we’d planned to do. No big deal. But it’s a day when people I don’t know, as well as people I love and care about, can change my life.

I’ve waited a long time to hear so much ‘gay talk’ spoken in public and in ways that weren’t always an attempt to knock people back or a kick people the stomach. I waited for years for ‘some one like me‘ to appear so I wouldn’t feel so desperately alien (Thank you Sen. David Norris, Una Mullaly, Grainne Healy, Ursula Halligan, Panti and the rest of the LGBT Braves). I’m waiting for a time when young lesbian & gay teens don’t have to battle  with bullies or with the demons that tell them they’re somehow 

I waited for years for people like me to be ‘normal’, to go from a sick, slick, dirty personhood (which we never were*) to being washed clean with the acknowledgment, respect and love of others. I’ve waited years for my head and heart not to ‘flip out’ whenever I told someone about myself or my ‘partner’; there’s always an assumption that she’s a he with the follow-up discussion about when I realised I was gay (Have straight people ever thought about when they realised they were straight???).

Like everyone, I’ve had plenty of eejits bully, harass & put me down because of who I am. They’re everywhere, those people who have been so poisoned by life or others that they puke it all over the rest of us in an attempt to make themselves feel better. 

I’ll be going to the Polling Station with my partner, to cast the vote that will mean so much to so many. Our time has come to shine, and should people vote yes, our dreams are on their way.  We’ll be joined by thousands of other people who are voting yes. Together for yes.