When I was in remission, I worked really hard at anything that I did. My husband met me that way. We actually went to Australia for our honeymoon and went scuba diving in the Great Barrier Reef. It was the experience of a lifetime. I had ankylosing spondylitis already at that time but my disease was well controlled with a drug called Celebrex combined with a yearly injection of Cortisone under ultrasound.
When we got back from the honeymoon, we seriously started thinking about kids. Because of my autoimmune disease, the thought of having kids wasn’t this pure natural joy and excitement. I had many questions that popped into my head because of my autoimmune disease. It’s hard not to feel like you’re always the one thinking of the what ifs but that’s what comes with having an autoimmune disease that is unpredictable. Thinking about having a baby should be full of happy thoughts and positivity but instead I got scared. Thoughts like, will I be able to carry the baby with no meds and Ankylosing Spondylitis? Will I be able to just go back on my meds? Will they still work? Will I remain in remission? Will I pass it on to my baby? It’s a dark cloud that can follow those with an autoimmune disease. We are unpredictable so anxiety can go hand in hand with the disease. A metaphor I like to use to explain how an autoimmune disease works is that when I’m in remission, I’m like a dormant volcano. It’s not erupting now but it’s supposed to erupt again and I couldn’t help but worry that a pregnancy would be just enough to do that.
I spoke to my rheumatologist about having a baby and I asked the very questions I was worried about. She offered me the best advice that she could based on her experiences, her research and her knowledge of Ankylosing Spondylitis. She really didn’t see any risk in me having a baby. There was no way for her to know what would happen to me. Honestly, she told me exactly what I wanted to hear. I wanted to have a baby and no matter what she would’ve told me, I probably would’ve gone ahead with a pregnancy. I truly do believe that many people who have Ankylosing Spondylitis and have their disease under control have very good pregnancies and no issues afterwards. My rheumatologist wouldn’t have ever recommended anything that could harm me. I just don’t want my experience to turn anyone off from getting pregnant if they have Ankylosing Spondylitis. Please let me know if I’m wrong in the comments below and you experienced what I did. I also want to repeat that I would do it all again just to have my son. A second pregnancy is out of the question for me because now I have a son who needs me and I can’t risk getting that sick again with him in the picture.
There’s a lot of guilt that I live with as a disabled mom. The guilt of my son being an only child weighs on me. The guilt of not being able to lift my son out of his crib weighs on me. The guilt of not being able to breastfeed for more than 3 months weighs on me. Those days when I had to cancel a play date because I didn’t feel well, weigh on me. The missed baseball games, hockey games, the inability to participate in an activity, those days after my infusion, it all weighs on me. I had to learn that perfection was an illusion and I made a commitment that I would never take an absence from something lightly and I would be there more than not. And I’m fortunate enough to not have to miss much. Being compassionate to myself was really key in finding peace with not being perfect. Being hard on myself by comparing myself to completely healthy moms and carrying all of that weight on my shoulders definitely had an impact on my Ankylosing Spondylitis. Stress is a killer and an AS inflamer.
After giving birth to my son, they didn’t know what was wrong with me. My blood work was alarming, I wasn’t myself and I was so stiff that I couldn’t lift my son out of his crib. Being a new mom and having to stress about simply lifting my baby from his nap made me feel helpless and hopeless. The amount of stress that this unknown played in my life was debilitating and had a drastic effect on my physical and mental health. I lost a scary amount of weight, which I would normally accept with open arms, but even I was alarmed. I now know that it was all due to stress. I didn’t realize the enormous impact that stress can have on our physical health. I really characterized stress as a mental health problem until it nearly killed me physically. I so desperately wanted to be the perfect mom. My friends all seemed to be doing it right and I just couldn’t keep up. I had so many medical appointments, biopsies, MRIs, ultrasounds, more blood work that it was hard to keep just that straight. They discovered that I had Primary Sclerosing Cholangitis (PSC). I finally knew what it was. The unknown became known, but wait, what is Primary Sclerosing Cholangitis? As I learned more about it l, I felt like I knew what I was dealing with and even though I wasn’t thrilled about the outcome, at least I could make a plan. I know too many people who avoid the doctor because they say they don’t want to know. You NEED to know. No there is no cure and there are no meds for Primary Sclerosing Cholangitis (for now), but I can do natural things to help myself like drink milk thistle, stop drinking wine (I didn’t drink any alcohol other than wine) etc. I can extend my liver’s life because I know. And I have done exactly that. I have had PSC for 10 years now and many need a transplant 10 years post diagnosis. My liver looks good. Knowledge is power.
I make all kinds of sacrifices to ensure I stay as healthy as possible and my son is my inspiration. So if you’re ever debating whether or not to have kids because of your Ankylosing Spondylitis, talk to your rheumatologist, and if they support it, do it. Don’t let the fear of what ifs dictate your life. Is it hard? 100% yes but it’s possible and the best part of my life. He motivates me to be better. He gets me back on track if I fall off just because he needs me. And if I hadn’t walked right through those fears, the world would be missing out on such an amazing human being.
I would love to hear about your experiences or any strategies you may use in the comments below.
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