Planning for the Unplannable

Recently I’ve received feedback from a few readers that “they used to like my blog, but now that it’s been so focused on my training instead of RA they can no longer relate” – or something to that effect. And that’s a valid criticism. I’ve been so focused on creating content for Health Central, that I’ve slacked on writing here, and training journals are an easy way of just getting something posted every week.

Writing about my training isn’t about RA, but it is a place to hide from it. I shared an amazing article from Women’s Running this week written by a woman with Ulcerative Colitis. Her reflection on running with an autoimmune disease moved me to tears on the train – “…I remember that I am not here to live with my disease and everything it might throw my way. I am here to live outside of it.” Training and racing is very much the same for me. It’s a place to retreat far away from my RA and focus on form, reps, sets and interval times, and as the progression of my disease threatens to encroach upon that safe place, I throw myself in deeper further chasing that escape.

Lately, my disease has felt so all-consuming that the escape is increasingly harder to come by. Back in January, I went to see my OBGYN for my annual exam with Dr. B. As she ran down my updated meds list she was shocked to see that I was on Norvasc for my high blood pressure. My cardiologist knew I was on oral birth control which contraindicates BP meds, and prescribed them anyway despite me asking that very question. Dr. B was pissed but more focused on finding a new birth control method ASAP as the combination of Orencia, Methotrexate and Doxcycline are Categories C, X, and D respectively when it comes to use in pregnancy.

With the pill no longer an option we quickly ruled out the patch, the ring, and Depo Provera too, and Dr. B encouraged me to consider an IUD. And then, out of nowhere, I started crying. Getting an IUD at 32 felt so permanent I explained, even though the logical, educated, medically savvy defender of reproductive rights in me knew that wasn’t true at all. I cried harder telling Dr. B that having children feels so far out of reach right now because every time one part of my health stabilizes another falls apart. The NP student in the room handed me a tissue and gently, reassuringly put her hand on my back while Dr. B grabbed a pen and a piece of paper and said, “Anna, you have time.” She drew me a bell curve of reproductive aging and assured me again that I had time.

I laughed weakly and thanked her for knowing me well enough to know that I needed a diagram to get me off the ledge I was teetering on. She continued “I think what you need is a plan – or at least an approximation of one so that if pregnancy is a goal, the rest of your treatment can be line with that eventual goal.” And she’s right. My current treatment plan (like most patients’) is reactive – responding to symptoms, lab results, pain, and progressive joint damage, but this is a long-term goal that needs a proactive approach.

She let me know that because I was so high risk she’d need another doctor to partner with her. We agreed that the next step was a consult with Maternal and Fetal Medicine (MFM) who could better counsel me on high-risk pregnancy, the genetic testing/counseling we’d need and how to coordinate the small village that it would take to make this a reality – if ever. Her office even made the appointment for me – which I rescheduled for last week… And then canceled completely.

As much as I want to make a plan (or an approximation of one) there’s one thing that remains looming that no plan will mitigate – that all of the consults, testing, etc. will lead us to one place… The place where we decide not to have children because the risks to my health are just too big to gamble with. This is one of my greatest fears in life second only to something terrible happening to someone I love, and, if I’m being honest, I really feel like that is the inevitable conclusion of trying to formulate a plan.

So I’m putting it off for at least a little longer. I’m trying to find comfort in the fact that Dr. B is adamant that I have way more time than I thought, and I’m trying to find hope, safety, and clarity in throwing myself deeper into my training. Because maybe, just maybe, if I can find or build my strongest self through every rep, set or interval, maybe I can get to a place where I’m strong enough to weather whatever the outcome of trying to plan may be. That if I can build a body strong enough to be a Spartan, maybe someday it will be strong enough to be a mother too.


10 thoughts on “Planning for the Unplannable

  1. Joy says:

    Wow. I always enjoy your posts, you’re such a great writer… But this one moved me. It’s not the ra I come to read about, it’s you! You as a whole and all the bits and pieces that make you whole. Your training is inspiring and motivating, even for someone like me that is not living with an illness of any kind. Ra is such a big part of your life so even if you’re not “writing about it” you are still writing about it. How to cope with the day to day, how to focus on a goal and achieve it, whatever the obstacles, how to make life altering decisions and your rational thought process verses the emotional process… It’s all you.

    1. I’m struggling to find the words to respond to your beautiful message, but all I can say is thank you. Thank you for reading my blog since the very beginning, and for continuing to encourage me to share my story. It means more to me than you will ever know!

  2. Hey Anna,

    This post really resonated with me. One of the hardest challenges I faced when I started to try get pregnant was the constant anxiety about what if something went wrong. Knowing that I would be unable to plan what happened as I tried to get pregnant and then during pregnancy often caused extreme stress. I wrote about it at pregnantwithjra.blogspot.com. Now a year later, I still am unsure of “the plan” that lies ahead in order for me to reach that goal, but I am optimistic that if having JRA has taught us anything, it’s that we can overcome any obstacles in our paths in order to reach our goals. Whatever our goals will be.

    1. I just read all of your posts over at pregnantwithjra.blogspot.com and I am sending you so SO much love right now. I think you’re incredibly brave to share the ups and downs of what you are going through in your journey to start a family, and I have no doubt that you will help many others by doing so. Your positive perspective in the face of loss is inspiring, and I am so proud to know you!

  3. Lisa Yazzie says:

    Hello,
    I just listened to your story which I found on MSN.com
    I was hesitant to click because I didn’t want to hear another advertisement for one of the many medications available but I’m so glad I did. You’re story is inspiring and I have strived (not as hard as you) to keep a positive mind about my RA.
    I first want to send positive energy to you for your struggle with and deciding to have a family.
    I was diagnosed at age 40 and I am now 48. RA kind of stopped me in my tracks so to speak. I was on high doses of medication and then was very fortunate to find an excellent doctor when I moved from CA to AZ. She lowered my meds substantially and when I moved to ND, I weaned myself off (I know, not the best idea). I was in remission for almost the last 3 years – no medication, eating healthier, some exercise (just not as consistent as it should be), lost about 20 lbs – and then a couple of weeks ago I flared up pretty bad.
    I don’t want to get back on the meds, have to do labs, side effects, travel from my rural residence to see a doctor (2 1/2 hour drive), etc. BUT I fear the damage if I don’t.
    I have 3 adult children and I have a foster daughter who will be 3 in a couple of weeks. My husband and I are adopting her and I want and need to be able to keep up with her.
    I say all of that, to say this: I just had an appointment with a Naturopathic Doctor and I am beginning a combination of natural supplements to see how I respond. This doctor says there is a direct correlation between menopause (hormonal imbalance) and autoimmune disease (or flareups) so I am going to give it a shot….I know its not for everyone and I don’t even know if its for me but I am willing to try before I run to the conventional medications for RA.
    Sorry for the long reply and I wish you the very best that life has to offer!!
    BTW: autoimmune runs in my family – grandfather, uncle, niece, mom and my cousin on my dads side has had juvenile RA since age 2 (several surgeries over the years as well). She is now late 30’s and has been able to have 2 children.
    Again, thank you for sharing your story and I hope that all works out for the best!!

  4. Emily says:

    Hi Anna, I found your blog after seeing your story on healthcentral.com. I want to thank you so much for sharing your story, for your strength and honesty in doing so. I am the step-mother of a sweet 11 year old girl with JIA. She was diagnosed just after her 5th birthday. It’s so hard for her father and I to help her. From the story I know that your family life wasn’t ideal, but do you think you might be able to sometime do a post about how parents and family can help their children/grandchildren/siblings cope with RA. We want so hard to comfort her and to also encourage her to find her strength and push through but it’s hard to combine both. I cannot wait to share your story and blog with my husband.

    This aspect of reproductive health is one I have always worried about for my step-daughter and I’m sure it’s not something she thinks about at all being only 11. Prayers and best wishes to you in the future. Keep fighting and thanks for sharing your strength. Can’t wait to continue reading about your journey.

  5. Hi Emily,

    Thank you so much for watching my Health Central story and visiting my blog too! Your stepdaughter is very lucky to have you – you’re obviously very committed to her living the best life possible despite her JIA. I like your idea for a post and have a few ideas, but would you be interested in doing a Q&A with me? I’d love for your and your husband to send me some specific questions (maybe 5?) and I could answer them in turn. Let me know your thoughts and we can connect via email if you’re interested in partnering with me on this. You can literally ask me anything!

    Best,
    Anna

  6. Lene says:

    I just want to hug you right now. Thank you for writing this.

  7. Stretch says:

    Hello Anna,

    Your Twitter feed led me to your Blog. I find you very inspiring and true warrior!

    When I read your words; “Writing about my training isn’t about RA, but it is a place to hide from it.”, I related. I feel, we all have a foundation to dealing with challenges. Those of us who have had any experience in competition or athletics, are going to start there. Some are going to start training, some are going to implode and feel incapable. Like you, I would rather establish a plan, strive for goals and be in pain because I tried to accomplish something, instead of because I am sick. Yes! I know my new limitations, but I would rather hide in the training.

    I wish there was not a Male / Female difference, but because I am a male, even those who knew me before my health turned, still find it hard to accept that I have an invisible illness. It is Okay for me to push and keep up on a good day, but if my body is struggling and I stop, more often then not it is found to be unacceptable.

    This became intensified, when I announced a goal to walk/bike across the United States for my sister and charity. The simple fact that I am thinking about training for the experience has many questioning my illness further. Even when I try to explain to them, I need something else to focus on, I make little ground.

    Early on, I wished my only issue was “mechanical” or “structural” because I have over come that in the past, not even close to what you have, so I hesitate to mention it. The possible cancer, autoimmune, internal challenges and food issues have been a struggle. For now, I have my mental strength, gumption and decent recovery rate to keep me active and able to hide in training.

    Thank you for the inspiration,

    Stretch

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