Archive for category Relationships

RA & The Convoluted Path to Pregnancy

I’m finally sitting down to write a review of Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May.

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Now this little book is only 183 well-spaced pages and I started reading it way back in October. So what the heck took me so long?

To understand that, a bit of backstory…

As a child, I was never very into dolls. I liked climbing trees and playing ‘kick the can’. I obsessed over animals more than babies.

When I was 8, I got a new baby sister. When my parents first put her in my arms I thought she looked like a sick alien. Luckily she grew into the cutest toddler ever.

I think what I’m saying is, I was never one of those girls who solely dreamed of motherhood. In fact, growing up, I didn’t give it much thought. I just knew that someday I would become a mom. It seemed obvious, but it was not something I obsessed over.

When I was diagnosed with RA, single and 29 years old, my mind immediately went to my hypothetical future children. Was I already too late? Would this disease prevent me from having kids? Would it prevent me from meeting a significant other?

Luckily, the answer to those questions was ‘no’. Although, it did get a bit more complicated.

I started dating my current partner pretty much right after my diagnosis (well, this isn’t entirely true, because we had actually been exes, broken up for several years). It is in fact probably my RA that brought us back together.

The diagnosis softened me and made me more vulnerable, made me want to seek the support of those I truly loved, those who didn’t judge me. The people who truly rose to the top of that list were my mom and my ex-boyfriend. Go figure.

Four years later, we’re still together and wondering how four years have already passed. We’re getting more serious about “us” and those big life questions – What type of living situation do we want? Where do we see ourselves in 10 years? How do we feel about building a family?

My answer to that family question was largely one of emotion. I told my partner that I really wanted to build a family, become a mom. That this is something I always imagined for myself. In fact, given my childhood attitudes and how little I’d actually thought about this, I was surprised at the severity of my emotional attachment to becoming a mom.

His response was built more on logic and fear. One of six kids, he agreed that family was something he always assumed he would have someday, but he was concerned. What would pregnancy and parenthood look like for me, given my RA? What did it mean to get off the drugs? How would the hormones of pregnancy change the trajectory of my disease?

We spoke for a long time and I promised I would dig into it and find more information. I also promised that if my health was truly at risk, we’d look at another path, like adoption.

Problem is, there’s not a ton of info out there about this topic. Suzie Edward May’s book became the sole title on my list of books on the subject.

The  book compiles many first person accounts of their path to parenthood with RA, including Suzie’s. It covers the challenge of getting off your RA meds to become pregnant. It covers the decision whether to stay off those drugs to breastfeed. It covers the possibility of a post-pregnancy flare.

It definitely made me feel less alone in my path. It made me feel scared and hopeful at the same time.

You won’t always succeed. There will be days and parts of days where you are fed up  and sick of pain. Sick of thinking creatively about pain, sick of not being able to do what you want to do, and sick of always having to consider your health. But remember – you have dealt with worse before. Have a cry and then pick yourself up and keep moving forward.

– Excerpt from Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May

Suzie doesn’t sugarcoat the hard stuff. I appreciated that, but it drove home what my partner had been trying to tell me.

This isn’t going to be easy. There will be hard times. You have to really, really want this. And you have to be willing to accept Plan B if it’s not in the cards for us.

I’d finished the book, but I felt more lost than ever. I couldn’t yet compose my complicated emotions on the subject.

In fact, the questions I had that Suzie glosses over are perhaps the biggest ones of all. She assumes that you’re reading this because you need kids. You have that drive and you really want your own biological children. But how do you arrive at that first decision? How do you know that you’re ready to take on the challenge of pregnancy and parenthood and ADD to it with the complications of RA?

Then my annual exam in January brought with it some news: I have a low AMH. I know, WTH is that, right? 

AMH, or anti-mullerian hormone, is thought to be a good reflection of your remaining egg supply. And mine was quite low for a 32-year-old woman (according to my gynecologist, there is disagreement on what these numbers really mean and their importance).

Your AMH levels decline as you age. According to my doctor, the level decreases by approximately 0.5 each year after the age of about 25. So my low number is on a steady march to menopause.

The other thing that decreases over time is the quality of your eggs. This is why many doctors recommend having kids before age 35.

This led me to a fertility clinic where they told me some good news: my AMH may be low, but my egg quality is excellent.

So what does this all mean? Well, it basically left my partner and I doing some figuring. We both believe siblings are important and would love to try for two kids. Given my RA, my pregnancies would have some extra time built in, meaning a timeline that looks like this:

  • 3 months off methotrexate
  • 1-12 months trying to get pregnant and being off methotrexate
  • 9 months pregnant and off methotrexate and Enbrel
  • 1-12 months potentially breastfeeding and off methotrexate and Enbrel (this is optional, as formula is available exactly for these situations!)
  • get back on the drugs and recover
  • rinse and repeat

At this point, I had turned 33 and my biological clock was like the relentless tick-tock in the crocodile in Peter Pan.

If I got off methotrexate now and started the path to pregnancy, it would be more than a year before I actually have a baby. Meaning baby number 2 is well over two years away. Given my dropping AMH, baby number 2 might not be an option at all. And this is assuming we are ready to start trying right now, which we’re just not.

So my partner and I are moving forward on freezing my  eggs. This will give us an opportunity at baby number 2 (and number 1 if we run into difficulty), even if my AMH is non-existent. And future baby number 2 (and/or 1) will benefit from the “excellent” quality of my 33-year-old eggs.

This is not a decision we landed on lightly. There are no guarantees when it comes to egg freezing. It’s expensive and not even remotely covered by my insurance. I worried we were just creating another delay in our path to parenthood by not just going for it now. Along with those concerns, I still have to be off methotrexate for 2-3 months (at least 2 months before the freezing takes place), which was a pretty scary proposition.

I’m currently on week 5 off methotrexate and feeling empowered about my decision to freeze my eggs. The weeks have not been easy. My symptoms are definitely flaring. My days are stiff and even my knees, joints that have never been symptomatic for me before, are getting in on the action.

I was truly  hoping that I would get off the drug and feel great, realize it really wasn’t helping and be able to live a life free of this not-so-fun medication. The silver lining is that I know the methotrexate was doing its job, suppressing my symptoms.

This convoluted path to parenthood, the big decisions, none of it is easy. But I’m ready to share my thoughts and my journey. I believe it’s all going to be worth it, and that is the whole point of Suzie’s book.

…make sure you have a full understanding of the impact the process could have on your life, be prepared and have action plans and support in place to deal with situations that may arise. Be open to things not going as you may desire. The more you are open to these types of things the less mental stress you will go through if things don’t go to plan.

Mother of two with rheumatoid arthritis, Australia (excerpt from
Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May
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Choosing to Become a Parent with a Chronic Disease

I was diagnosed with Rheumatoid Arthritis or Rheumatoid Autoimmune Disease when I was 29. It’s an awkward age to be told you have a chronic disease.

There was so much I hadn’t yet accomplished. At the time, I was single, struggling to get my business off the ground, training for a marathon, and pushing thoughts of kids and marriage into the future. And then, a diagnosis of RA threw all that up in the air.

I feel like the pieces are still settling, four years later.

I got back together with a long-term boyfriend, largely because of my diagnosis. When I needed him, he was there without question. All the issues we’d had in the past paled to how much we obviously cared for each other, and that remains true today.

I pushed through a lot of ups and down and pain to cross the finish line of my first marathon. Today, I still run. Though training for a second marathon has faltered twice due to pain, I still have it in the back of my mind as a goal.

I tried to manage my business, while attempting to lower stress (doctors orders, and so much easier said than done in the world of start-ups!). The business is now doing better than ever, but stress management remains a constant struggle.

And then there’s kids…

I always figured I’d be a mother someday. I was never in a rush about it, but down the line, raising a family was always something I imagined for myself. After my diagnosis of RA, I suddenly found myself in a new reality.

When you have a name for the pain you’ve been experiencing, it becomes unavoidably real. There was no more blaming running or snowboard injuries. I couldn’t blindly keep pushing myself. I had pain walking and writing, bone erosions that no amount of medication could erase, extreme fatigue that was even causing me to fall asleep at work, a whacked-out GI tract that led to weight loss and avoiding eating all together, and depression because I had no idea why any of the above were happening to me. With a diagnosis came the answer of why, but it also brought the necessity to slow everything down and focus on getting better.

The new reality also meant being placed on strong drugs to control my symptoms, including a chemotherapy drug that is used to induce abortions in ectopic pregnancies. This particular drug requires women to be off of it for an extended period of time before even attempting to get pregnant.

Suddenly, I was far less sure I would ever be a parent. Four years of focusing on my health, coming to terms with living with chronic disease, and finding a new normal has given me the space to seriously revisit the question of parenthood.

Huge questions still exist for me. These are questions that only those of us living with chronic illness and our partners can understand.

Will I be healthy enough to go through pregnancy? If I ween off my RA drugs, will I return to the level of pain I was at pre-diagnosis? Will I be able to stay off the drugs long enough to breastfeed? If I can successfully have one child, will I be able to have another? Will pregnancy make my symptoms worse or better? Will post-pregnancy change my disease trajectory? Will the drugs I’m on be as effective post pregnancy? Will my RA slow me down as a parent? Will I pass the genetic disposition for autoimmune diseases on to my kids?

To help me navigate the complexities of this big decision, I’m reading Arthritis, Pregnancy and the Path to Parenthood by Suzie Edward May.

I’ve only just started the book, but I already identify with Suzie so well. She was diagnosed at 27 before having kids. The book offers a lot of hope, but also non-sugar-coated truth. I’ll give a more complete review when I finish it.

In the meantime, can anyone weigh in on what factors you looked at when deciding to become a parent while living with a chronic disease?

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Invisible Illness Week

Alright, officially Invisible Illness Week was Sept 9-15th, but better late than never, right?

1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: probably 2010
4. The biggest adjustment I’ve had to make is: listening to my body and taking it easy when I’m in pain or fatigued.
5. Most people assume: they know what Rheumatoid Arthritis is, but they’re usually thinking of Osteoarthritis.
6. The hardest part about mornings are: I move a little slower than I used to. AND remembering to take my vitamins.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Oxo Good Grips kitchen tools and my grip jar opener
9. The hardest part about nights are: when fatigue equals a busy mind and insomnia, not sleep.
10. Each day I take 6 -14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: will try anything. Personally, yoga, acupuncture and changing my diet (no gluten, less dairy and sugar, more veggies) help a lot. If I could afford it, I would get massages more often.
12. If I had to choose between an invisible illness or visible I would choose: I’m a private person, so probably invisible.
13. Regarding working and career: I’ve kept my career, but I’ve embraced (and have been blessed with an office that embraces) a flexible schedule. This lets me start my mornings slower or work from home when I need to.
14. People would be surprised to know: how bad my symptoms were before I went to the doctor. I was really good at the “grin and bear it” denial technique.
15. The hardest thing to accept about my new reality has been: that this disease is chronic. When I was diagnosed I thought I would be the exception to the rule and go into remission within the year. This hasn’t been the case.
16. Something I never thought I could do with my illness that I did was: RUN a marathon.
17. The commercials about my illness: feature older people golfing and make me roll my eyes.
18. Something I really miss doing since I was diagnosed is: going out for a night drinking with my friends. This is a double no for me because the drugs I take (methotrexate) are hard on your liver and I try to be kinder to my body these days.
19. It was really hard to have to give up: alcohol (see above) and high heels. I still indulge in both on occasion.
20. A new hobby I have taken up since my diagnosis is: blogging!
21. If I could have one day of feeling normal again I would: go-go-go ALL day long – run, climb, dance, party. I’d wear high heels. I’d stay up all night. I wouldn’t even give a passing thought to “paying for it” the next day or even week.
22. My illness has taught me: I’m stronger than I think and everyone is going through something, so be patient and kind with yourself and others.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re too young to have arthritis!” If this were true, I wouldn’t have it and hearing this just makes me feel ashamed and misunderstood.
24. But I love it when people: ask me sincere questions and want to know more about RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two I come back to: “Never, never, never give up.” – Winston Churchill; and “So it goes.” – Kurt Vonnegut
26. When someone is diagnosed I’d like to tell them: It’s tough, it’s scary, it sucks. It will get better. You will feel better than you do today.
27. Something that has surprised me about living with an illness is: the supportive community of people I’ve met (mainly through online support groups).
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me cry and then ordered me Chinese food in bed and hung out all day, watching funny TV shows.
29. I’m involved with Invisible Illness Week because: I think awareness of invisible illnesses is important to funding research and finding cures.
30. The fact that you read this list makes me feel: honored and vulnerable

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Fringe Binge

If I’ve dropped off the planet recently, avoiding writing blog posts, seeing friends, and even doing work, I have a perfectly wretched excuse: I’ve been binge-watching the TV show Fringe.

From early April until last night at 1:30 a.m., I watched FIVE seasons (in my defense, the last season is only 13 episodes!) like it was my job. I believe in one record day I watched eight episodes… That’s just embarrassing.

I’m sure at least some of you understand, if the articles coming out about increased binge TV watching are correct. In fact, with so many on-demand services, binge watching has become the behavior that many studios and writers are catering toward. You’re now far more likely to see a serial show whose story grows on itself episode after episode, than a Law & Order style show where each episode stands alone. It means better stories, but it also means more addictive TV.

I guess the important question here is why we – or in this case, I, as I can only speak for myself – binge watch.

I have to admit, it’s been a very long time since I’ve watched so much TV or been so involved in a show, truly caring what happened to the characters. I think the why for me was my own sort of perfect storm.

After getting back from Europe, I was more achy and fatigued. Having more RA symptoms is a very isolating experience. It means I don’t feel like saying ‘yes’ to social plans. It means a lot of nights on the couch, bonding with my cat. (My cat loves a good TV binge because I sit on the couch waving around cat toys and he works out for both of us…) It means I’m more likely to be irritable and I just feel like a bummer to be around, so I don’t want to be around anybody.

I also was a bit down from the general let down of coming back to “real” life after a really great vacation. Wait, why do we have to work? Why can’t we just perpetually travel? At the same time, many of my good girlfriend’s have been busy with big life changes of their own. Meanwhile my boyfriend’s been dealing with a lot of personal/family/homeowner stuff and I’ve felt (rightfully or not) our relationship slipping as consequence.

All of these things led to a perfect storm. Of loneliness.

And what’s one perfectly understandable, but totally unhealthy answer to loneliness? Make friends with the people in your Netflix queue!

I will say, it’s not all bad. If anyone is looking for a kick-ass lead female who makes you want to be brave and strong in your own life, look no further than Fringe’s Olivia Dunham. Also, some of the sci-fi in that show may just fuel my next novel. It may, if I’m lucky, even feed more creative ideas at work.

Those are the positives. There are plenty or negatives of my TV binge, which means I truly can’t recommend it as a cure for anything except maybe recovering from surgery. My carefully planned healthy diet went downhill. I’ve had more tortilla chips than smoothies/juices lately. Eating while watching TV is a really bad brainless activity. Perhaps most importantly, it’s only allowed me to feel even more disconnected from the people in my life.  (The title of this post should be ‘Never TV Binge Alone!’)

Anyway, this morning, after reaching and being totally satisfied by the season five finale of Fringe, I feel like I’ve been released from a prison of my own design. I feel like I’ve been given the gift of getting my life back.

No new shows are on my horizon (it’s like when you finish a really good book and are hesitant to pick up another, because you fear it won’t compare), just saying ‘yes’ to a social life and beginning to enjoy my summer.

And, to summarize with my new found anti-journaling skills:

Went on a Fringe binge,

I feared I wouldn’t come back

Given second chance

– or how ’bout this? –

Anti-matter and

parallel universes,

Life should be that cool.

😉

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When To Get a Second Opinion

Wise words from Thomas Edison. You can get this poster @ behappy.me

I’ve been a bit concerned about the relationship between Interstitial Lung Disease and Methotrexate over the last couple weeks (yet trying not to worry, because worrying leads to flares which leads to more of a chance of RA complications…ha! FML!).

I will still talk to my primary rheumatologist about this on Tuesday, but in the meantime, I’ve decided to seek a second opinion. This wasn’t as easy a choice as it may sound. It felt like I was choosing to cheat on my rheumatologist and giving up on my treatment plan. As I told my friend, my relationship with my rheumatologist is something I want to be sensitive too – he might be in my life for many years to come!

I started by going to my allergist, who also happens to be a respected immunology expert. Up until 2008, I was seeing him once a year for checkups on my recovery from Interstitial Lung Disease. In many ways, he knows my medical history better than I do.

He told me that there is indeed a link between Methotrexate and ILD, and recommended I get a second opinion at a research hospital that specializes in lung disease. They also happen to have rheumatologists who specialize in both ILD and autoimmune diseases. Cool.

Turns out these docs are also in more demand than my current rheumy. I need a referral to even have a chance of seeing one. This left me with the choice of getting that referral from my rheumatologist or from my primary doctor (who I haven’t seen in years because I have another OB/GYN). I chose my primary doc so as not to shake the boat on my relationship with my rheumy. This choice, of course, requires yet another doctor’s appointment (yippee! – where is that sarcasm font when you need it?).

A couple other things of interest came up at my appointment as well.

My doctor said that, given my medical history, he doesn’t think it is likely that I have gluten or dairy allergies or sensitivities. He recommended just eating healthfully and focusing on eating for my marathon training.

I don’t think this means that I will run out and eat gluten again (I’ve already eased up a bit on the dairy), but maybe I’ll think about being more flexible. I also still believe that eating to lower inflammation in my body is a very positive thing I can do to help control my symptoms. My doc is very science-based (as he should be), so until a trustworthy study comes out showing how diet can ease/cure/whatever RA, I think he will be giving this advice.

I ate lunch with my family yesterday and mentioned this, as well as the idea that perhaps GMOs, pesticides and all the other industrial crap that’s made its way into our food supply was more responsible for the rise in gluten intolerance and autoimmune diseases than gluten itself. My brother-in-law and sister’s reaction made me feel like a social pariah. I plan on doing more research on this and posting it here, but I’m certainly not the first person to state this theory, so I don’t believe it’s totally off target… Does anyone have thoughts on this? Or good articles I can forward to my sister??

My doctor provided me with a list of websites that he likes to use for research because they are entirely science-based:

I hope this list helps everyone as you do your own research and become your own advocate for your health.

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Dropping the RA Bomb

I think that authoring this blog has really helped me open up about my RA. A lot (not all yet, but maybe I’ll get there) of the shame and nerves that came with “admitting” to someone that I had this disease have faded.

I’ve had two recent experiences telling a date about my RA. The first time I’d ever told anyone about my RA aside from close friends and family and doctors was on my second date with a very sweet guy (maybe a little on the early sign, but I don’t think there are hard and fast rulles with this). We were at a pretty nice, new restaurant, where, being gluten and dairy free, I couldn’t eat half the menu. I asked the waiter about some gluten-free options and happily chose a modified scallops dish.

My date kept inquiring about my diet, giving me ample space to drop the RA bomb. “Are you allergic?” No, not exactly. “Are you trying to lose weight?” What? No…

Finally, toward the end of dinner, I brought it up. The timing was probably a bit odd, given all the opportunities he’d presented me with before. At any rate, I said something along the lines of, “Since you were asking earlier, the reason I’m on this diet is because I was diagnosed with Rheumatoid Arthritis in March.”

Ka-boom. The RA bomb had landed.

I went on to explain that the elimination diet helps you determine if an allergy or sensitivity to a certain food is making your symptoms worse.

He just nodded, asked how I was feeling. Then he asked if it was hard to do physical things, and immediately apologized for his invasive question. I didn’t mind it though, it’s a fair question. I hadn’t heard of RA before my diagnosis, but if I had, it would have probably surrounded the disability/disfigurement horror stories of the disease.

So I brushed it off, saying, “No, it’s really under control with the meds. I barely notice it.” Yes, that’s kind of a lie. It’s not totally under control and I do notice, in fact, I’m probably hyper aware of all symptoms.

I figured that if we kept hanging out, it would inevitably come back up.

I’m happy to report that the world didn’t implode. He didn’t run away and never call again. He didn’t treat me like a victim. It just was a fact.

The second time was similar, but the window wasn’t diet, it was drinking. Since I’m on methotrexate, which is hard on your liver, I’m not drinking much (my doc says 4-5 drinks per week – no, not all at once! – is fine). So we were running, and he was talking about wanting to not have any alcohol for 30 days, so I talked about how I really wasn’t drinking much either.

Then, ka-boom! The RA bomb once again landed.

He asked questions about my treatment and I answered honestly, and hopefully without any trace of shame. I even told him that my symptoms aren’t totally under control, but that clinical remission is my goal and hopefully where I’m headed.

Again, he didn’t run screaming for the hills. He did call me again.

Lesson learned. Your honesty and courage allows other people to react in a similarly courageous, empathetic way. So, no more shame. Thank you blogosphere for allowing me to reach this point. From here on out, I’m owning it. I’m no longer admitting to a shameful thing, I’m informing someone about a part of my life.

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