My story is long and not necessarily unique, but I want to share how I went To Health and Back Again and am here to tell the tale.
I hesitate to start at the beginning, because I am old and because the beginning is relatively uneventful. But I suppose that’s sort of the point. As a child I often received perfect attendance at school, got straight A’s, and had boundless energy. I was a dancer and a Girl Scout, and had a pretty great childhood with only minimal emotional trauma. I mention this because I do believe it played a role, but otherwise I felt loved, cared for, and was given all basic necessities and then some.
Fast forward to college, more of the same. Great health, nothing major to report in terms of doctor visits or chronic anything, and was able to receive my minor in dance, which meant moving my body many hours a week, without issue.
After college, I worked in retail management for a number of years. At 22, I was hired into an incredible retail opportunity and took it. At the time of hire, however, I didn’t know I was entering another emotionally abusive situation, which I do believe was a trigger in the days to come. At 26, I met my future husband, still in great health, with plenty of energy for both work and play.
Prior to meeting him, however, I also underwent surgery for breast implants and had begun hormonal birth control. To this day I question how they may have hacked my overstressed system and caused their own damage. Read more about biotoxin illness HERE.
Christmas of 2003, I came down with a stomach bug (or food poisoning but nobody else was sick). This event was rather a significant trigger though it seems otherwise innocuous. I say this because I have a history of emetophobia, which is the fear of vomiting. When I’ve shared this with others, they often say something like, “Oh yeah, I hate puking too.” But for those who understand emetophobia, it is not something we “hate,” it is an event which strikes panic like no other. Just to hear that someone you know has gotten physically ill can cause accelerated heart rate, obsession over whether or not we might get it, and strange behaviors like holding one’s breath while walking past the restroom where someone may have gotten ill. These are obviously not normal behaviors, but for emetophobics, they are nothing out of the ordinary.
So I get physically ill for the first time in over 15 years that Christmas. And after healing from that, I have my first ever real panic attack. But I didn’t realize that’s what it was; I thought I was getting the virus again. As I experienced panic, I would lose my appetite, become overwhelmingly nauseated, and have to leave wherever I was. Over the next 6 months, I dropped down to 102 pounds, could rarely eat, and had panic attacks up to 10x a day. I thought I could overcome them by having a strong mentality and pushing through. But I was wrong.
After many months of suffering, I finally decided it was time to try medicinal help. I would be moving to Germany with my then fiance, and could not fathom a change that big as awful as I felt. I experimented with a few different SSRIs, finally finding one that wasn’t great but at least stopped the panic. It allowed me to function, though I never felt great.
It allowed me to function, though I never felt great.
Fast forward a year and a half. We lived in Germany, traveled frequently, and I was able to work full time and also receive my master’s degree. I was living a full life though I definitely had residual symptoms from anxiety. No more panic though, and I was able to wean off Paxil. I did not have a hard time weaning and in a couple weeks I was off my very small dose. I had also gone off my birth control prior to this time.
In 2006, we moved back from Germany and I was pregnant with our first child. You know they say you always come back with a baby or a cuckoo clock, so I guess we were on the money there. I had a pretty uneventful pregnancy and Noah was born very healthy. I did have some crushing fatigue and weakness late in my 3rd trimester but otherwise there was nothing much to report.
I recovered well from his birth, still off birth control and still without an SSRI. My anxiety was under control and I did not have any other health issues. I became pregnant at 3 months post-partum which was a HUGE surprise. Again, I experienced (and was grateful for) another uneventful pregnancy and labor. Sadie was born healthy and on time. And then things started to shift.
Around 5 months post-partum, in Spring of 2007, I started feeling exhausted when I woke in the mornings. It felt as if I had taken a benadryl or sleep aid and then not slept all night, none of which had happened. I felt edgy and a little “teeth grindy” and would have times when I felt lightheaded or dizzy. My fuse was short but I was also under a lot of stress as my husband was deploying for 5 months, leaving me behind with a 17 month old and 5 month old. I chalked up my symptoms to stress and new mom fatigue but something wasn’t right.
I chalked up my symptoms to stress and new mom fatigue but something wasn’t right.
I finally saw a general practitioner, the first doctor I had seen in years other than my OBGYN. She ran a few labs and naturally everything was “normal” except for my thyroid test. She had not run a full panel but my TSH was telling. It came back at ZERO. As in NIL. She suspected I had hyperthyroidism but ran more labs after a few weeks to see for sure. She also failed to run any antibody tests, which could have shown evidence of Graves, but did not. Several weeks later, my TSH had risen dramatically. I was referred to an endocrinologist and after a few months of waiting, had my answer.
My first chronic diagnosis of anything was with Hashimoto’s Thyroid Disease. I had the elevated TSH and my antibodies were elevated as well. My Free T4 and Free T3 were still within decent ranges but it was something to watch. I cried when the doc gave me a script for Synthroid. And I refused to take it.
I cried when the doc gave me a script for Synthroid. And I refused to take it.
I remember taking a trip back home to Houston during this time. I told a family friend my symptoms of rapid pulse, fatigue, and dizziness. She told me I was depressed because my husband was deployed. Sure I was sad he was away, but I knew this was something else.
From there I sought a functional MD. I had to fly from Little Rock, where we lived, to Houston, where he lived. He ran all sorts of tests and did some pretty strange science experiments on me including peptide injections in my throat (I know!) and muscle testing, which at the time was pretty wild to me. This was in 2007-2008 and I had only begun to peel back the layers of this world; and it was pretty fascinating. And a little scary if I’m honest.
For the next year I took my supplements, ate gluten free and dairy free, and tried to follow all of Dr. B’s rules. Some days I felt like I was making progress. Other days I felt just as awful as I had before. I even had my breast implants explanted; I was willing to try anything to feel better. I threw everything at this, but in the end, I still had Hashimotos.
I found a doctor willing to prescribe Armour Thyroid, and I finally starting taking it. I felt better. I gained energy, I finally felt “stable.” I did not feel like I had my old life back, but I was making strides. And at that point, stable was amazing.
I did not feel like I had my old life back, but I was making strides. And at that point, stable was amazing.
We moved from Little Rock to Illinois in 2009. My kids were 1 and 2. I was still stable, but not fantastic. But I was functioning and grateful. We settled into yet another new home and made new friends. I was referred to an acupuncturist who was an incredible healer. I stayed on Armour and got balanced in the traditional Eastern way. I got back in a gym and felt pretty darn good overall. I was still eating gluten free, and I was able to keep up with my littles while my husband traveled with the military 200 days out of the year.
We decided we wanted to try for a 3rd baby. Dr. Lee, my acupuncturist made sure my body was ready. And knew before I did that I was pregnant. To this day I am forever grateful for his help in steering my health. He is a miracle worker in so many ways. My pregnancy with Stella was great, I was probably in better shape in many ways during my pregnancy with her and I was 4 years older (33) when I carried her. Her birth was unmedicated as I had hoped and planned for, and she was perfect. My body was exhausted after that experience with pain, but I too bounced back.
At 8 weeks post-partum, when my husband was overseas in the Pacific, I became sick with the flu. Like flies, each child dropped, while I was at home alone with them, sleep deprived and weary. We were all very ill and my newborn was sick as well. We all recovered, but in retrospect, I feel like I never did quite bounce back to 100%.
We all recovered, but in retrospect, I feel like I never did quite bounce back to 100%.
From there we found out we were moving to Washington DC. At 5 months post-partum (3 months after we had the flu), we took a trip out East from Illinois. On that trip, I had my first period after Stella was born, had symptoms of intense hyperthyroidism. Rapid pulse, diarrhea, and edginess. My milk dried up almost overnight. Sure I was stressed with the househunting and moving again, but there was something else happening here. My body was out of whack and I felt awful; but not nearly as awful as what was to come.
When we got back to Illinois from that trip, we had discovered our basement had flooded when the sump pump went out. Everything was waterlogged and “remediation” consisted of pulling up the carpet to run a fan and then placing the same carpet and padding back down. Not knowing anything about mold, I didn’t realize this was subpar treatment, and I didn’t question it. My symptoms continued to escalate.
Things were up and down from there. I’d have decent days and I’d have days where I felt like I could peel my own skin off. I had days where I could participate in my life, and I had days where I became so dizzy and disoriented and brain-fogged I would get lost in my own neighborhood.
I thought maybe my hormones were off after having Stella so in my first few months of living in DC, I decided to visit an OBGYN, thinking they could do a bloodwork hormone panel and take a peek inside my broken body. It was there that this new doctor told me I was not sick. She said motherhood was very hard and that I needed a gym membership and a therapist. I will never forget her words though the image of her face is long gone. I was broken and she dismissed every word I spoke.
I was broken and she dismissed every word I spoke.
We had been in Washington DC for several months and things just got worse. I was able to get into see a functional MD whom I loved and adored and she ran every test under the sun. It was determined I had nutritional deficiencies, elevated viruses like HHV6, EBV, and Coxsackie. And there it was a big red question mark on my Lyme Western Blot. Dr. F suggested that in addition to supplementing Vitamin D and upping my protein, that I do further testing with regards to Lyme, especially because I felt so wretched.
Going down the Lyme rabbit hole is an experience. Because so many of the infection tests are inaccurate or incomplete, tick borne illnesses are often treated clinically, or according to symptoms. I had multiple antibody bands indicated I *COULD* have Lyme but I didn’t have a CDC positive test. And some of the antibody bands were cross reactive with other infections, so we never had a clear picture of just which infections plagued me.
But because of how ill I was, we decided to move forward with treatment. I saw 3 different Lyme specialists in the DC area. I took sometimes 5 different antibiotics at a time and around 40 supplements. I took injectable antibiotics too. From Doxycycline to Rifampin to Azithromycin to Tindamax to “bust cysts” to Mepron for babesia, I did it all. I took herbs like Samento and Banderol, I did energy treatments. I explored every inch of my body with experimental treatments that made me want to die.
I explored every inch of my body with experimental treatments that made me want to die.
I was not suicidal, but there is something about the suffering of illness and then the suffering that comes with these treatments on top of the symptoms of illness that makes it all unbearable. I would cry to my doctors and beg them to help me. They were empathetic and kind, but there were always more questions than answers. So we just kept trying.
After 13 months of appointments and brain MRIs and the scariest symptoms you can imagine, I decided to end my treatment protocol. I had not improved and if anything, I had gotten worse. I had symptoms of brain swelling and disorientation, dysautonomia, twitching, fatigue, vertigo, weakness, air hunger, brain fog, migraines, and so much more. I remember taking notes of my symptoms and just filling papers with them. There was no end.
I had been researching other ways to heal from chronic illness when I came across “paleo” online. Maybe it could work for me too, I thought. I dug in. I started juicing, tossed my antibiotics, kept my supplements, changed from gluten free to paleo, and set my eye on the prize. What I didn’t realize until later, when we were getting ready to move to another home in DC, was that we had toxic mold in this home too.
Still not knowing much, I dug into that research too. Wow, could this have been why I got so much worse during Lyme treatment when I should have improved? Maybe. Because after proper remediation and moving from that home, I did improve. Immensely.
The next couple years I did much better overall. I was finally healing from some of those scary brain symptoms, and I was really getting my life back. I was back to socializing and was able to be much more involved in daily life. Even though I didn’t feel great, my life felt sort of normal for the first time in years. I was elated.
Even though I didn’t feel great, my life felt sort of normal for the first time in years. I was elated.
I was able to hold pretty steady here for a few years until after I started Legit Bread Company. I had been going pretty hard with writing 5 cookbooks in 3 years and pushing my body, now that I was able to. But it may have been excessive. I got wrapped up in the excitement of being able to function, and I went for it all. After starting Legit Bread I began to have monthly crashes. I could not tell if they were hormonal or something else, but when I had them, I experienced a lot of weakness, fatigue, and pain in my limbs. Sometimes my arms would fall asleep in the middle of the night. Sometimes I’d wake up gasping for air. Sometimes I’d have heart arrhythmias. Sometimes I’d lose hope after making so much progress.
I never did find out what triggered those monthly flares. I tried very hard to push through when I could but had also succumbed to the thought that I would always be a medical mystery and if my tales helped others with similar predicaments, then at least I had that.
In 2017, we left DC and were moved back to Illinois. I was extremely unhappy to move away from DC as I loved our home, our friends, and our neighborhood there. It really felt like we belonged after so many years of military moves. But alas, the mission takes us on many adventures, and so off we went. The first of two years in Illinois was relatively uneventful. My flares had slightly calmed and I got swept up into daily life. I was working hard to save up for an investment property, wrote another (my 5th) cookbook, and was immersed in Noah’s gymastics-filled life. But after the first year back in Illinois, things shifted once again. And I was petrified.
But after the first year back in Illinois, things shifted once again. And I was petrified.
I began to have bone and nerve pain in my arms and legs. Extreme fatigue and disorientation. And now my mood seemed to be severely affected but in a way that I didn’t recognize myself. This wasn’t anxiety or depression, and I didn’t know what was broken, but it was an extremely terrifying time in my life. Ultimately, we discovered we had mold in our HVAC coils. And because it was Winter, we had the heat blowing spores all through the house. I would get better and then worse again, but the trend was downward further and further. We stopped using the heat during the coldest months of the year. Instead we used our gas fireplace excessively. I think that made us feel worse but until we could source and remediate, this felt like the only option.
It got bad there. So bad I had to ask my husband to delay a trip he was required to take. In almost 20 years of being a military spouse, never once have I asked for such a thing. I have not asked him to miss work or take care of me. But I was not capable of being alone with the kids. I had been treating mold poisoning for awhile but I was not improved. I was back up to 30-40 supplements taken religiously, and I was not improved. I was eating clean and doing all the right things, but I was not improved. I was desperate.
It was at this point I started researching alternatives to pain relief, since that was one of my most disabling symptoms. I found where my old friend SSRI helped increase free floating serotonin and reduce pain. I decided to run a neurotransmitter panel as a reference before I ran yet another medical experiment on my body. It was shocking. I was depleted in almost every single one. Was it from mold? Was it from physical suffering? Chicken or egg? It didn’t matter. I was ready to try this last ditch effort. And it worked.
I was ready to try this last ditch effort. And it worked.
Prior to this point, I didn’t know how I was physically going to be able to leave bed and move to Tampa, which we now had orders to do. I truly didn’t know how I would even ride in a car. Or carry a bag. Or function. But within a few weeks, I already felt the shift. I had started the lowest dose of Zoloft and it worked. My pain lessened. My energy increased. My ability to do very simple tasks came back. I started to recognize part of myself for the first time in a long time. I made the move to Tampa and I did it well.
Here we are almost 2 years later. Do I have symptoms? Yes. Do I have fatigue or migraines sometimes? Yes. Was I just able to homeschool 3 kids, including 2 teens, while running multiple businesses and have my best year in a decade? Also yes.
I know that to live in my body means to be willing to practice patience and grace with it. I know that I’ve always been a little different and it’s ok if my body is too. I continue to be blessed beyond measure and better than I deserve. I am thriving for the first time in a long time, and I am overjoyed to have been given this many more years with my kids after writing them goodbye letters that one fateful day. Goodbye is one day, but it’s not here yet. And until it is I will continue to create, give back, and be grateful for it all.
Thank you, Jennifer. You are very brave in sharing your story. Thank you for your transparency. You are so right: living life in a broken body takes much courage, grace, and patience. And I, too, count myself as very blessed. I think that daily counting our blessings and daily choosing joy both make a difference, especially in the darkest times. Thanks again for sharing your story.
Amy Branger says
Thanks for this. I am about a decade older than you have have a very similar story. I after after a flare of intense joint pain for almost all of 2019-2020 I have recently started on an RA drug (although I am testing negative for RA) It is working and I am feeling great but still want to get to to root cause. Chronic illness/pain is so debilitating and the hard part is that it is also invisible.
You sister is healing
I appreciate your story and share several things with you- fear of vomiting, being one of them. ? People think I’m crazy, nuts, ridiculous. I managed to raise two kids- my husband did the barf thing and the loose teeth thing and I did the rest. Never knew it was a real “thing”. I really resonated with “I was broken and she dismissed every word. “ I felt a gut punch when I read those words. So true.