My Journey to Health and Self Advocacy: Part 1

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The path one mom took to figure out what was wrong with her health and how she is advocating for herself and addressing those health problems.

Family of four

By Alyssa Hulme

This is a story of my health journey. I share what worked for me and I can only speak to my own experience. Please seek out medical advice that is tailored to you through the help of experts that understand your actual situation. Don’t stop seeking help until it’s found. 

I got pregnant with my eldest child the evening after my last college final exam in 2010. (It was a wonderfully celebratory night.) While pregnant, my husband and I moved to LA where we started our first post-graduation positions. I got connected to a producer and started work as a PA and a writer for a reality TV show. It was a great gig and so fun, but as pregnancy waned I became more and more sick. Eventually, I was too ill to even continue writing from home and had to leave my position. Up until now my husband was taking temp jobs while waiting for his real career to start as a financial consultant. He started with LEK two months before I was due – a position that had him consistently working 80+ hours Monday-Friday. He was totally burnt out on the weekends and was constantly trying to catch up on work and sleep. When our daughter came, we were still adjusting to his new position and new work-life balance of him gone all the time and me being home all the time; I took the place I always wanted as a stay-at-home mother and primary caregiver for my child, but without the support I’d always wanted in a spouse. 

Baby Elliana, fresh from the hospital.
Baby Elliana, fresh from the hospital.

The first few months of parenthood flew by in a blur of learning, newness, errors, and lots of spit up. I had a clockiy baby all to myself 24/7. From months one thru five, Ellie nursed for an entire hour seven times a day and didn’t sleep longer than 20 minutes for daytime naps. I had read all the sleep training books and done all the work, but this girl just couldn’t sleep longer than 20 minutes during the day until she was six months old. I couldn’t shower or cook a meal or even make important phone calls in that minute space of time and my physical and mental health started to decline rapidly. 

Seeking Help

By month two I was depressed. By month four I realized I needed to do something but didn’t have the support or mental space to make it happen. Somewhere around month five, I finally broke down in front of my husband and basically yelled at him until he realized how bad things were and that postpartum depression was a real thing. By month six I was on a low dose of Zoloft and as we waited for my meds to fully kick in, I found out I was two months pregnant with my son. My daughter was eight months old when I found out her brother was already 2/9th of the way here. 

April 2012, newly pregnant and unaware.
April 2012, newly pregnant and unaware.

The meds must have kicked in at that point because we were very excited for this next little one. Pregnancy had me feeling fantastic again, no meds needed. Happy, normal me again. Until I was seven months along. 

Expecting Again

I had been ignoring early labour pains for several months at the suggestion of my doctor – I wasn’t dilating, so the advice was to just suck it up. I’ve learned I’m very good at this. Until I’m not. I started contracting at four months, but waited until six and a half to take it beyond “ignoring it.” By seven months it was clear this was too big to ignore. Contractions came in daily waves that knocked me out. Every four minutes for hours and hours. It didn’t matter if I was resting, hydrated, empty-bladdered- my entire pelvic floor would swell and bruise and cause so much pain I couldn’t even crawl to the door the time my sister rushed over to care for my one-year-old and take me to the hospital. But there was never any obvious cause. I was put on a drug that “might help” and doctors left me to manage my own pain alone (this drug was later pulled from shelves due to birth defects that we luckily avoided). 

Since doctors had nothing for me, I went on bedrest. Even so, things immediately escalated and I couldn’t even sit up in bed to eat without going into labor. I spent the next eight weeks laying on my side until it became too sore to bare, and then awkwardly rolling over to the other side, still aching from the last roll. 

It was torture. Torture to lay in such pain, not even able to sit up to eat food. I spent two months in excruciating pain, so bad that my doctor prescribed me very heavy narcotics to ease the pain and was told to use at my own discretion. Not wanting to expose my child to those drugs, I saved them for only the most unbearable of times. I think I used three pills over the course of three months. Because movement intensified the entire experience, I would only shuffle slowly to the bathroom and back to bed, but sometimes even then it would all get so bad that I had to stop and my husband had to half carry me to the toilet and lower me down. I can tell you, you don’t know humility until you have to sit shivering in a tepid bath while your husband washes your hair for the first time in two weeks. 

I still have PTSD from this time and it is truly a miracle I ever wanted children again. I ended up having my sisters and mother-in-law come in shifts to care for my eldest and help with the housework. I chose an early elective induction, something I never wanted to have to do, simply because of the mental and physical torture I was in. At 39 weeks my perfect baby boy, Max, came into the world peacefully and with him deep calm in my soul. 

Happy siblings

Health Problems Returning

I spent a couple happy weeks navigating between my two babies, 16 months apart. I even dealt with my son’s GERD pain management on top of it all and was doing great! Then months two and three hit and by six I was seeking out medications, therapists, and doctors to help me with depression. Months went by with no change and my medication was adjusted again and again. I switched from my OB to a primary care doctor to a psychiatrist, seeking help to balance out all that wasn’t me. 

I had naturally shedded my baby weight in the first few months of postpartum life, but suddenly weight started to creep back on. Even while depressed I could see this and decided to take control of my food and exercise. I used my very little bit of energy to research how to create balanced meals with carbs, fats, and proteins. I did what conventional health wisdom told me was balanced. I tried Whole 30. I tried gluten free. I signed up for the gym and dragged myself there more to get a break from my kids than anything. 

For two glorious hours my kids would play with the caretakers in the daycare center at the YMCA and I would take my yoga mat and find a quiet corner of an unused studio and just nap. When those were being used I told the caretakers I was going for a run outside and to call my phone if my kids needed me, took my yoga mat outside and slept on the concrete. I could never catch up. 

Eventually I accidentally found a gym exercise I enjoyed and discovered a love for work out. I was able to do a short TRX workouts and spend the remaining hour and 15 minutes getting ready for my day in the locker room including a long hot shower, blow dry, cute clothes and makeup- this was my only time without the kids. I was able to force myself into all this for my own good, but still the depression did not budge and now I also was having insomnia. 

Fixing your health as a mom pinnable image

Helping All of Me

Eventually I moved on to taking a spiritual approach to my healing and started meditating seriously every day for an hour. I incorporated this into my gym time and did what I call “walking medications” with my eyes closed holding onto the treadmill bars. I added extra scripture study and was able to reach out to God more clearly and more consistently than ever before. He taught me so much during this time and yet I was still heavy with depression. 

If you don’t know what it feels like to be depressed, here’s an example: doing the dishes. I couldn’t do the dishes without it becoming a crushing burden. I *knew* it would only take five to ten minutes to complete, but it took the same amount of mental energy and *felt* as if it was an eight-hour task in the middle of caring for my little ones. The dishes might be 12 inches deep, but they may as well have been 12 miles. My husband took them over as soon as I was finally able to articulate this bizarre exchange of effort and result. He was happy to have a concrete way to improve my situation and worked hard to erase any guilt I might feel about it all. My job was to get healthy. 

When my son was about 20 months I came to a crossroads with my psychiatrist. We had exhausted all the level one and two medications and the next levels came with significant risk. I decided to pause my work with her and try out as many other alternatives as possible before choosing into some heavier medications. I started taking some very expensive mico-vitamins. I saw an energy healer. I started even more yoga. In the middle of all this and while still maintaining a healthy diet, I started packing on weight. I gained twenty pounds in a month and I wondered if this was just what age looked like (I was 25 at the time, so looking back this thought really makes me laugh.) I was on the verge of acceptance, but I listened to my gut and pushed a little farther. 

Finally Finding Help

I had already made my OB and my primary care physician run labs for my thyroid and any other autoimmune possibilities and they all came back in the “normal range” from every possible category; I was told that my mom’s hypothyroidism wasn’t hereditary and to move on, but my gut said otherwise. Next I turned to a doctor who did not take insurance, but was at the top of his field as an Endocrinologist. Hundreds of dollars later (first visit + fresh set of labs + follow up) and it was clear – I had Hypothyroidism and Polycystic Ovarian Syndrome.

And it turns out there *is* a hereditary component to autoimmune diseases and malfunctions. It’s not a one-for-one hereditary deal, but particularly from mother to daughter, children of mothers with autoimmune diseases have a significantly higher risk of developing some kind of autoimmune issue. Before this point I had asked every single doctor I ever had, even the “specialists,” about this and all of them told me that my mother’s issues could not affect me at all. And yet here, finally, was the truth. Not an assumed truth, not half informed, but whole. We found that my hormones were way out of whack. I was given some Synthroid, Metformin, and a low carb diet, and sent home for 3 months to try it out. 

Within three weeks I lost 30 pounds. I snapped out of the fog. I was me again. Labs showed my thyroid in balance again so I was able to stop taking Synthroid (and despite being tested twice a year – more during pregnancy- I have never yet needed to be on them again!) I continued with the Metformin and the low carb diet and have till this day. I went back to my OB and showed him my results. He was flummoxed; how could he, “the expert” miss such an obvious diagnosis, especially when I gave him such specific details and direct questioning about ovulation and autoimmune issues? He just scratched his head and shrugged. 

This pivot came at exactly the two year mark of when it all began, so it’s possible this was just a manic depressive episode running the typical two year cycle, but I have yet to ever be anywhere near this low point since. I now also take L-Methylfolate, a supplement to support brain health (also zaps any anxiety I have when I skip it), as well as a vitamin D supplement, and a baby aspirin. These changes are all at the bequest of my doctor and are heavily watched with labs and appointments. It’s all still not covered by insurance, but it is 1,000X worth it for me to maintain my health. Before now all my other doctors saw my numbers as within normal range, but my new doctor sees that these numbers, while normal for another person, don’t suit ME. I now have my own range and we rely even more heavily on my symptoms. 

Self advocacy pinnable image

Conclusion

My journey of self-advocacy goes far beyond this story here, but these experiences were key for me as I laid the foundation of my own health and personal choices. I learned that no one is going to tell me to go rest or that my pain is legitimate until I also believe it to be so and don’t take no as an answer. I learned that no one else will fight for my health; I am my own advocate. I learned to trust my gut, research my options, and discovered that doctors, lots of doctors, are purely wrong. Even the experts. My experience of healing and finding tailored care changed the way I speak to and about specialists. I am the one making the decisions about my health. I am in charge and that is powerful beyond anything else. 

Alyssa Hulme is a freelance writer and educational consultant. She shares her journey with family and education on Instagram @thegiftedhomeschooler. 

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