Alison is a registered dietitian, board-certified in oncology nutrition, and a cancer thriver. Her expertise in oncology nutrition and personal experience with her own cancer diagnosis and its treatment provide her with the unique perspective of being able to relate to her clients on an entirely different level. Her content is consistently focused on evidence-based guidelines and seeks to increase the awareness of the power of nutrition to complement traditional cancer therapies.
It sure has been a journey…and continues to be.
Before I dive in, I want to express the goal of this post. This post is thoughtful, respectful, truthful and inspiring.
I’ll admit it. I have been hesitant to share this journey with the world. But after months of carefully praying on it, I decided I needed to.
What happens if there is one woman out there, with lupus just like you, experiencing a similar journey, wouldn’t you want to give her hope? ~A friend.
Yes. Yes, I do. So if you are the one person looking for hope, I pray you find some here.
I know my journey is far from the most difficult one out there.
The journey started in October 2013, when I was diagnosed with lupus. There were so many thoughts running through my head the day I found out. But the one I constantly wondered was:
Will I be able to successfully have children?
Although my mother never admitted it, nor have I asked her, I know she wondered the exact same thing. It was one of the questions she would sneak in at the end of my lupus check-ups every now and then.
Even though my doctor responded with “we’ll have some work to do, but it is possible for Lauren to have healthy children” the worry it would never happen didn’t go away. The thought was followed up with, “even if I can, will I be able to get out of bed to feed children? Will I be able to run and play with them?”
Come February 2014, I was put on a drug called methotrexate. It is a fairly common drug in the autoimmune world and it helped me immensely. The major flaw? Methotrexate, if taken while pregnant, would lead to miscarriage and major birth defects.
While Jeff and I were not yet married and not ready for kids, it was heartbreaking to know “my disease” would hold us back if and when we were ready. (We were married in October 2016)
For the first two years of our marriage, we heard the inevitable question everyone gets soon after their marriage: “When do you plan on starting a family?”
How do you thoughtfully “break it to someone” you can’t start a family because of the disease you are fighting without making it awkward?
Attending baby showers became increasingly difficult. Don’t get me wrong, I was so happy for every mama-to-be. But each shower made the belief of growing our own family more difficult to believe. It was grief I constantly hid from everyone, including Jeff.
After years of hard work, my doctor and I decided it was time to start weaning off methotrexate. While I was excited for the opportunity to prove my body didn’t need it, it’s not something you can stop cold turkey. It would take two years to decrease my weekly dose of six pills to zero.
What a long, scary two years.
Each time I decreased my dose, I was frightened that something bad would happen and I would have to go back to my original dose. Thankfully, it all worked out in my favor and I never had to do that.
Finally, in June 2018 I took my last methotrexate. The feeling was exhilarating. I had proven to myself my body didn’t need it. Through hard work, exercise, stress management, and the proper diet I was methotrexate free.
The next step was to wait for three months to get it out of my system, THEN we could “try”.
The methotrexate journey officially ended mid-August 2019, and the journey to ovulate began.
Like too many women, the struggle to ovulate was real. Peeing on sticks for 7 – 14 days just to see if your body was doing what it should was exhausting. PLUS, I needed to stay flare-free (minimal to zero lupus symptoms). I was warned conceiving with active lupus can make pregnancy dangerous. Talk about stress on top of stress!
Each month that went by with no positive pregnancy test, the more stressed we (Jeff and me) became. If you think about it, at this point we were two years into our journey of starting a family.
Due to my healthy state, my doctor felt like we could get more aggressive quicker than the average woman. Once again, medication became part of the journey.
For years, I had fought to get off medication but I found myself in the pharmacy line once again. I beat myself up about it.
After a few months of Metformin, in hopes for my hormone levels to even out (my doctor assumed I had PCOS since Alison was diagnosed with it), I was put on Femara in hopes to stimulate ovulation.
Femara added another layer of time and frustration. On day 21 of my cycle, I would go in for a blood test to see if my HCG levels were rising which would indicate possible ovulation.
In the middle of the fourth round of Femara with no luck, we turned to a fertility clinic. The goal was to have a plan — a feeling of being “in control”. At that point, it was time to wait for my next cycle before we could move forward.
While I was waiting for my period, I found out someone in my life was pregnant on social media. At first, I had no emotion. It was when I went to bed that night when the tears started. When the tears dried up, I told my husband “I’m done. Let’s just figure out what’s wrong with me and move on.”
I know my journey seems fairly short to be so dramatic. Some couples go YEARS trying to conceive without ever having any luck.
How did I see it? Since my lupus diagnosis, I had given up so much.
I put my health in front of my social life (not the norm for someone my age). I was constantly watching friends and family indulge in the foods I once loved. I watched others do activities I could no longer do.
And after all of that sacrifice, my body still couldn’t do what a woman’s body was meant to do. Why would I continue to force my body through continued medication and procedures? Why would I continue to put myself through that mentally?
I was done.
I didn’t see it as quitting. I saw it actually putting our fate in God’s hands.
Three days later, we found out we were pregnant.
Yep, you read that right.
As this post goes live we are 16 weeks pregnant!
Wow, I can’t believe I just wrote that. Even after hearing a strong heartbeat and three ultrasounds, I still can’t believe it.
But the journey continues.
Although my lupus is “in remission”, I am defined as high-risk. There is no need to go through all of the things that could happen. I have a team of doctors who I trust and are keeping their eyes on me and our baby. (Seriously, an ultrasound almost every single week depending on how things go.)
For those of you who prayed for us, thank you. And we will continue to welcome your prayers as we have a long road still ahead of us.
But there are a few more things to say.
Being pregnant does not mean I have abandoned the pain and stress we went through to conceive. My heart still hurts thinking about the times I cried in the shower after a negative pregnancy test. It also means I have not forgotten about the women who are still struggling and looking for answers.
I was not open to talking about my difficult journey because I knew it would make others uncomfortable. Not because they didn’t care, but because I knew they wouldn’t know what to say.
We can be surrounded by dozens of loved ones, but if we can’t openly talk about our joy AND grief, we’ll forever feel alone.
Journeys of struggle are not inhuman, they are what makes us human.
If you know someone struggling with fertility or loss, call them or have coffee with them. They may be feeling more alone than you realize. If you don’t know what to say, in my opinion, the best thing you say is “That sucks. I am sorry you are going through that. But I’m ready to listen to whatever you’re open to telling me.”
For those who are praying to conceive and start a family, I see you. I hear you. As hard as it is, try not to lose hope. And find someone to talk to, because you aren’t alone.
If you have a story you want to share, comment below. If you are someone you know is struggling with fertility or loss, feel free to share in a comment below in any way you feel comfortable and we will add you or them to our daily prayers.