Monday, July 22, 2013

Interview With Author Suzie Edward May: “Arthritis, Pregnancy, and the Path to Parenthood”

I recently read “Arthritis, Pregnancy, and the Path to Parenthood” by Suzie Edward May.  Suzie is a mother of two from Australia who has rheumatoid arthritis.

I had been eyeing this book for a long time, but wasn’t sure I wanted to order it all the way from Australia.  However, it is really the only book of its kind out there, and I would say it is a must for any woman who has RA and is hoping to some day have children.

I talked a bit about my personal experience with this in the previous post, “Arthritis, Pregnancy, and the Path to Parenthood”.

But I’ve invited Suzie here today to tell you a little bit about herself and her book. 

I love the cover of your book.  You look so happy, despite the trials and tribulations that can come with getting and being pregnant (and a mother) while dealing with RA.

First off, can you tell my readers a little bit about yourself?

SEM:  I am a 38 year old mother, wife, author and lawyer.  I live in Perth, Western Australia and I have lived with chronic inflammatory RA for 12 years.  I am an active health consumer with ‘Arthritis and Osteoporosis Western Australia’ and ‘Arthritis Australia’.

Why did you decide to write a book specifically about pregnancy?

SEM:  When my husband and I decided to start a family I looked for guidance as to how to do it.  I knew I had to come off my medication but it was very frightening to contemplate.  When I found no information as to how to achieve this, I decided to write a book to fill this gap.  I knew there must be other women around the world who had been through this process before me, so I worked hard to find them, speak with them and share their stories (and my own) through this book.

How much did you know about RA and pregnancy prior to becoming pregnant?

Being my first pregnancy, I only knew what I had read in ordinary pregnancy books.  I hadn’t read anything about arthritis and pregnancy as such, as there was no information available about it.  I had lived with RA for 5 years so I had some experience with it, but my real understanding and test of my body came during pregnancy.

Despite the issues that come with RA and pregnancy, did you always know you wanted to have children?

SEM:  Absolutely.  I was always going to be a mother.  I never contemplated not being a mother.  I was certainly never going to let RA (or anything else) stop me from becoming one. 

One of the biggest components of becoming pregnant with RA is getting off of meds.  Can you describe some of the challenges that come with this?

SEM:  The challenges are twofold.  They are physical and psychological.  While I expected the physical pain and fatigue (although perhaps not to the extent that I experienced it), the emotional turmoil was very unexpected and difficult to deal with.  After getting used to taking medication in order to function, I now had to trust my body and stop taking these medications, it was frightening. 

I totally get that.  It seems completely antithetical to go off of meds.  What are some of the other challenges that come with getting pregnant with RA?

SEM:  Some women fall pregnant easily while others take longer.  Some women find that the more active their disease, the harder it is to fall pregnant.  Some women need IVF treatment (even just to ensure they fall pregnant quickly rather than waiting months and months while off medication); while some women find it difficult to fall pregnant at all.  It is different for everyone.  There is little information about fertility and RA.  Women need to speak with their Rheumatologist about their particular situation.

What are some of the positive aspects that come with getting pregnant with arthritis?

SEM:  For me, I felt confident that my body could do something right for a change.  When we feel like our bodies fail us (with our pain and disability), it can be a wonderful feeling to see our body doing something correctly.

Trusting your body when you have RA can be a very difficult thing.  How important is, not just your rheumatologist, but your entire medical team, in getting and staying pregnant with arthritis?  And at what point in the process do you bring them in (i.e. how helpful was your rheumatologist in talking to you about pregnancy before you became pregnant?).

SEM: Your medical team is always crucial in the management of your RA.  During pregnancy, this is particularly so and you will likely be seeing more specialists such as an Obstetrician and/or a Gynecologist.  I think it is important that your Rheumatologist (and any other specialist you usually see) knows that you want to become pregnant so they can help you through this process.  They continue to play an important role during and post pregnancy, especially if you don’t go into remission and/or have a post-birth flare.

Some women go into remission during pregnancy.  Others flare badly.  Some women flare badly after giving birth.  What advice would you give to women to be prepared for these varying possibilities?

SEM:  Be prepared!  You may be lucky enough to go into remission, you may not – you may have a post-birth flare, you may not – you won’t know until you are there.  So, the best thing to do is put strategies into place so you (and your family) are supported during these potentially challenging times. 

How much time did you have in between pregnancies?  How long were you on meds before you had to go off of them again?

SEM:  After giving birth to our first child, it took 26 months to become pregnant with our second child.  This was due to a number of factors such as my choice to breastfeed (nurse); the time I took to detox off medications before attempting conception and the time it took to conceive the second time.  I only returned to medication for four months between pregnancies. 

Your book addresses pregnancy, but not infertility. Can you speak to this decision?

SEM:  I did not find enough evidence linking infertility and RA to warrant including it in the book.  It is a very interesting issue and I hope more research is developed in this area.

Some of my friends have started to have babies.  While I can’t specifically speak to their experiences, it seems easy.  What do you say to women with RA who want to have children, but know they will have a very different path than their healthy friends?

SEM:  The fact that we live with RA (or any other form of arthritis or chronic health issue) means that we are living a different path from our “healthy” friends already.  I also believe it makes us stronger as we overcome challenges everyday.  I don’t believe parenthood is easy for any mother or father – I think it is the hardest role in the world – even if you are “healthy”.  But it is also the most rewarding, incredible and worthwhile role you could do.  If you are fortunate enough to have a child, the love and joy you feel for your child outweighs even the worst arthritis pain.  I have no regrets and if I had my time over, I would do it again.  My children are my world and while everyday brings challenges, they are worth it.

Would you recommend that partners read this book? I think it would be helpful to give my boyfriend a window into what our future might look like, but I’m also a little worried that it will scare him.

SEM: I think it is imperative that partners, family members, your friends and even colleagues and health care professionals read this book.  The more you can help people close to you understand what you live with and what challenges you may be facing in the future, the better equipped others are to support you.  The fact that our partners are with us, despite our RA, means that they love us.  Preparing your partner for what lies ahead is so important.  The more you educate others, the less alone you will feel.

That’s really good advice.  What have you learned from your experiences?

SEM:  I have learnt that we are not alone.  That there are issues affecting women (and men) with arthritis that people are not talking about enough – like pregnancy and parenting.  I have learnt that women with RA are strong and that they can achieve anything they put their mind to.  I have learnt that information is power and that the more you understand, the less fear and isolation you feel. 

What do you hope readers will get from your book?

SEM:  Accurate, honest stories of women who have been through the process of having a family while managing chronic arthritis.  An honest outline of the potential challenges you may face from pre-conception through to when your baby is 12 months of age.  But most of all…hope, inspiration and a sense that you (and your RA) are understood and that you are not alone.

What’s next for you?

SEM:  I have a couple of other projects in the pipeline that will be complementary to ‘Arthritis, pregnancy and the path to parenthood’.  I look forward to telling you all about them soon. 

Thank you so much for your interest in and support for my book.  I wrote this book for you and your readers, so it is wonderful to connect with you all.  Feel free to email me with questions or just for a chat at

Thanks so much for talking to me!

Thanks, Suzie for sharing your story!  And thanks for stopping by Getting Closer to Myself today.  And thank you for your e-mail to me when I ordered the book, before we talked about you doing an interview for my blog – and the personal note that you sent to me along with the book.

I purchased this book directly from the author, and you can, too!  Visit

Thursday, July 18, 2013

“Arthritis, Pregnancy, and the Path to Parenthood”

I have had conversations recently with a few women my age who have RA.  Our experiences in terms of pregnancy counseling have largely been the same.  We became ill at a time in our lives when having children really wasn’t seriously on the radar yet – young twentysomethings who had a lot of other plans before settling down and having kids.

And unlike young women who receive cancer diagnoses and are immediately told to freeze their eggs before they start treatment, if they are planning to have kids, those of us with RA – despite being on medications often times that are just as toxic – are not told to do anything similar, or anything at all, in regards to our future fertility and children.

There are examples of women with lupus getting pregnant that I can think of, but largely none that I can really think of with RA.

Clearly there’s a gap here that needs to be filled.  And that gap is filled by the book “Arthritis, Pregnancy, and the Path to Parenthood” by Suzie Edward May.

I’ve decided to split this discussion into two separate posts – one about my own feelings and experiences in this regard and one specifically about the book – because I did not want my personal experiences to overshadow the thoughts, opinions, and experiences of Suzie, who is a woman with RA who has had two successful pregnancies.

Anyway, healthy moms can read about pregnancy as it happens.

But for chronically ill moms, especially those with arthritis, we can’t read about it as it happens because there is so much that goes into pregnancy BEFORE actually becoming pregnant.

And so many books on pregnancy, I would imagine, are written assuming that the mother is healthy, and doesn’t take into account the unique situations of those who are not (and those who are not yet pregnant).

While we can’t read about our illnesses before we have them, we can read about things that we have slightly more control over, like the timing of a pregnancy, and everything that goes into it. 

I have been frustrated because my rheumatologist largely refuses to talk about pregnancy until it is no longer “hypothetical.”  Well doctor, if pregnancy is in my five year plan, is it really “hypothetical” anymore?

I think not.

That’s why, when I find a new rheumatologist when I move at the end of this summer, this is one of the first topics I want to discuss.

I have wondered for awhile whether the goal is to be on meds, get as healthy as possible, and then get off of them to get pregnant, or simply work to get off meds to get pregnant.  Maybe these are different sides of the same coin, but because I’m not sure, I want and need answers.

I think that this silence on the part of doctors is particularly telling.  And I think it can have very negative consequences.  As I said earlier, to this point, I can’t really think of many examples of RA and pregnancy.  But there are examples of women with lupus having babies, such as Sara Gorman and Christine Miserandino, and others in the chronic illness blogging community, such as Laurie Edwards and Kerri Morrone Sparling, who chronicled their experiences with chronic illness and pregnancy.  These are great examples.  But when you don’t see or hear about women with RA getting pregnant, you might think it’s not possible at all.  Or that it’s something that doctors discourage.  If it’s really a safety issue, that’s one thing. But if it’s lack of knowledge or judgment, that’s another, and it’s not right.

Pretty much all I knew about RA and pregnancy prior to reading Suzie’s book is that I will have to basically be off of all meds other than steroids – and will have to be off of meds, depending on the type, for between three months and a year before trying to conceive – and that I will add a high-risk obstetrician to my medical team.  That’s it.  And in reality, that is not it.  There is so much more to know and think about, but my knowledge is lacking and so is my rheumatologist’s.

For instance, it’s been hard for me to even fathom going off of meds.  How will I function without them?  “Arthritis, Pregnancy, and the Path to Parenthood” answers this question and many more with a combination of personal experience and interviews with others with arthritis.

Stay tuned for my interview with Suzie Edward May, author of “Arthritis, Pregnancy, and the Path to Parenthood.”

Thursday, July 11, 2013

What Happens When Your Medical Records Aren’t Yours?

You get a bill for $361.26.

I almost had a heart attack.  And then I burst into tears.  And then I got pretty freakin’ pissed off.

For that price, I could pay for 18 appointment co-pays with my current insurance.

I could do a lot with that kind of money, but I cannot afford to pay that for my medical records.

I wanted my medical records because I am moving.  And how was I supposed to know that my medical records over the past five years would be six inches thick, more than 1,000 pages?

When I got home one night a few weeks ago and saw a box from a health company in Atlanta, I figured surely that couldn’t be my medical records.  Then I picked up the box and it was heavy to the point where I knew it probably was.  And before I even saw the bill, I had a sinking feeling in my stomach. 

I feel like I am being punished because I have a complicated medical history.  It’s insane to me that these people look at this six-inch thick medical record of a 27-year-old, and rather than wonder what my life might be like as it is, they stick it to me even more.

And I was under the impression that if I was going to be charged more than $50, I would be contacted before they went ahead with processing my request.  That never happened.  Because if it had, I wouldn’t have been willing or able to pay that much. 

The other thing is that I poured through every page and found nearly 350 pages that were blank, only had the hospital logo on them, or only had the line about “electronic mail not being secure”.  There were 1,202 pages at 0.23 each.  I accounted for those, which included the 350 garbage ones I just mentioned.  But then there were 20 pages at $1.16 each and 30 pages at 0.58 each.  I couldn’t account for those.

But the real question is, besides how I was going to pay the bill is how can I be a responsible patient if my medical records are in Michigan and I’m in New York?

How is it possible that I have to pay for my own medical record?

This is the kind of thing that, as the chronic illness community, we cannot stand for. 

We have to speak out when injustices like this happen to us.

And I know I am not alone in these experiences.

When you can’t afford your medication, medical records, or something equally important regarding your health, it causes “good” patients to become “bad”.  It sabotages a patient’s quest for health, and can have deadly consequences.

I waited to write about this until the situation was resolved.  I didn’t want to hurt my chances of a decision in my favor.

Ultimately, I was bounced around between the medical records people in Michigan and the company that copied them in Atlanta.  Maybe if this were all done in Michigan, it wouldn’t cost so freakin’ much.

The person in Atlanta said that they didn’t know why I hadn’t been contacted ahead of time and said they had to call Michigan.  Almost a week went by without hearing anything, so I took matters further.  I knew that the worst that could happen was that I would be told I had to pay the full bill.   

So I contacted the Better Business Bureau.  The situation was stressful enough that I didn’t really trust myself to handle getting bounced back and forth, which seemed to be inevitable.

And this is the way a lot of health situations get handled.  You get bounced back and forth, the system hoping that you’ll just give up.  But when you feel you are being disenfranchised, you can’t just give up.  It allows the system to perpetuate the problem. 

This isn’t even really about this one incident anymore.  It’s about the fact that the financial burden of health-related expenses is making it impossible for some people to take care of themselves. 

I often think back to the fact that if I wouldn’t have had built-in health insurance from my graduate program, I probably wouldn’t have had health insurance otherwise, and I probably wouldn’t be alive right now.  That’s a sobering thing to think about. 

So fast forward five years later, I am alive, but being financially raped to gain access to my own medical records.  It’s just totally insane and surreal.   

It’s never fun to get a bill that you’re not expecting, especially when it’s for paper.  The worst part is that these people know how important my medical record is to me.  And I guess they figured they could totally take advantage because they know I need it.

Because let’s be honest.  Healthy people don’t need their medical records.  And if they do, they aren’t 1,200 pages long. 

I think that if you are going to be charged for your medical records, there should be a limit on how much they can charge you. 

Ultimately, it was determined that I should have been contacted ahead of time before the order was processed and because I wasn’t, the company changed the bill to $50.   

This felt like a huge victory for me.  But the thing is, I probably would not have gotten a resolution if I wouldn’t have contacted the Better Business Bureau.  So if you’re wondering if they deal with medical-financial disputes, they absolutely do.  I’m not for blowing smoke if there’s nothing to blow smoke about, but I do believe in looking out for yourself when companies/hospitals/insurance/pharmaceuticals are taking advantage.  And I very much felt that is what happened in this situation.   

So, in case you’re curious, this is what five years and 1,200 pages of medical records looks like.  Enough said.