NOTE: This is part four in a blog series on my 15-year journey to better health. Want to start from the beginning? Click here to start with part one.

Just when I thought things couldn’t get worse, they did.

Once more unto the breach, dear friends, once more

–King Henry V, Shakespeare

The Leg Pain

Over the next several years, my hip pain spread. While the flare up that put me on the couch for a week had subsided, there was some underlying core issue that hadn’t resolved. Slowly, the pain spread down one side of my body. My glutes throbbed. My outer hip ached. My IT band was so sensitive that even the lightest touch sent jolts through me. Many times the pain would lock up the muscles in the front of my thigh, my shin, my calf, and even cause burning in to top of my foot.

The pain was getting so intrusive, it started to affect my life. I started cancelling plans on the worst days. I started to sleep only on my other side. I lived with a rolling pin and massage ball in my bedside drawer.

After suffering through our move to a new city, I signed up for a massage membership, desperately hoping for relief. I started going at least once a month, and when things would get bad and I could afford it, I’d go more. Initially I just went to whomever was available at the time, but then I found Pan. Pan was amazing at deep tissue massage. She’d know exactly where things were the worst, and while I’d almost pass out during the massage, I’d feel almost normal again the next day. I went to Pan every time after I found her.

Three years into Pan helping keep my pain manageable, I went to make an appointment with her to find out that she had left my massage place. With no information on where she’d gone, I was destitute once again.

The Pelvic Pain

Around this same time, I started to have intermittent crippling pain in my pelvis. One of the first times I remember it happening was the day after I’d gone out to a happy hour with an old coworker. The pain was excruciating—like someone had shattered a glass bottle and driven the shards into my pelvis. As I sat doubled over in my bed for hours, I scoured my brain trying to figure out what it was from. I thought for sure it was some weird food reaction. I remember I had eaten edamame, and thought maybe it was from the soybeans. But even after avoiding all soy products, it kept happening, seemingly randomly. When it would happen, it would prevent me from doing anything else for 4-8 hours, and then leave me sore for days after.

It wasn’t until a few years later when I had my IUD removed that I realized this pain was happening during ovulation. I remember talking to my husband about how it just kept happening and I couldn’t figure it out, when he estimated that it happened about once a month. That clued me in enough to start tracking it and sure enough, it happened exactly three days prior to my expected ovulation. I thought this was a breakthrough, and was so excited this would help me figure things out, but after a bunch of online research and input from online support groups, the general understanding was that ovulation pain is normal if you don’t have endometriosis, which had already been ruled out for me.

The Mental Health Decline

On top of the increasing pain in now multiple places, my mental health continued to suffer. Even though I previously mentioned anxiety as an early sign, I wrote it off as normal for a new mom. But slowly and imperceptibly, multiple aspects of my mental health continued to decline. About a year after the birth of my second child I read Elizabeth Gilbert’s book Eat, Pray, Love and started this site. At that time, I rated my mental (and physical) health both as a two on a scale from one to five.

As I state in my intro to this site, my life was (is) picture perfect, but I was miserable inside. My mind was constantly inundated with toxic thoughts that darkened my every day, no matter the light that surrounded me. I sought help from books, documentaries, and podcasts. I tried taking a mind-over-matter approach, and wrote about it in my post Don’t Mind the Gap. I tried the practice of Cognitive Behavioral Therapy, and wrote about my initial excitement here in Toxic Mind.

I remember vividly the time when my daughter’s kindergarten teacher called me to ask if anything was going on that was upsetting for her at home. I sat silent on the other end of the line, stunned by the question. I was pretty sure I was the thing that was upsetting at home…

It wasn’t just anxiety and depression growing stronger and stronger inside me. Anger was too. I remember vividly the time when my daughter’s kindergarten teacher called me to ask if anything was going on that was upsetting for her at home. I sat silent on the other end of the line, stunned by the question. I was pretty sure I was the thing that was upsetting at home, but I still asked for more information. The teacher recounted how my daughter was coming to school in tears more mornings than not. My heart sank. I knew I was having a hard time with the mornings, and yelling more than I’d like trying to get out the door, but until that call, I didn’t realize how negatively it was affecting my kids.

After that incident, I started to see a marriage and family therapist. She was wonderful at helping me identify and understand my triggers, manage boundaries, and recognize when I needed help. But while the therapy and the learnings–including the tenets of CBT–helped drive improvements over the years, it still felt like I was swiping at the flames of a fire. I remember sitting in therapy going over the same types of situations every time, and coming to the same end… they didn’t make logical sense for me to be so bothered by them, but I was. I am not a quitter, and I don’t just make a slight attempt at something. I tried with everything I had to improve my mental health, but something deeper inside me was broken that my mind couldn’t control.

Another Fail in the Medical System

After discussing some of these struggles with a friend, they recommended that I might find help from an internal medicine doctor, as they’re better at looking at interconnected issues within the body and finding underlying causes. So I went to Minneapolis Magazine’s latest issue of Best Doctors, and found a top-rated one near me, and made an appointment.

Like before, I arrived hopeful—I couldn’t believe I’d gotten an appointment with a top doctor! I told her of the intermittent stabbing pains in my pelvis, of the digestive issues, the fatigue, and the anxiety. She ran a bigger set of blood tests than I’d ever had before, and scheduled me for a CT scan of my pelvic area.

Unfortunately, the results were again disappointing. She told me my blood test results were all normal. I would find out years later that some of them were not, most notably my Thyroid Stimulating Hormone or TSH. This is because labs define ‘normal’ ranges based on the most common results returned across all people who get the test, and don’t consider the fact that most of the people getting the labs are doing so because they don’t feel well. But I’ll talk about this more later.

My CT scan also came back somewhat normal. But here is where I made one of my biggest mistakes in my journey–I didn’t remember what I was told and I didn’t follow a next step recommendation that this doctor gave me. Apparently, this 2014 CT scan found the same dilated ovarian veins that I hadn’t been told about in 2011. But this time I was told about them. She suggested I might have something called “pelvic congestion syndrome” and recommended I seek further care from an OBGYN (who isn’t the right practitioner to see about this issue, but I’ll learn that later). Either way, I didn’t follow up on this important finding. And things continued to get worse.

More Unexplained Illness

About a year later, on top of the allergies and digestive issues, I began struggling with a new unexplained illness. I was home alone with my three-year-old son and seven-year-old daughter, as my husband was away on a hunting trip, when I started having fire-like pain on the left size of my body around my bra line. The pain was so bad, that it was difficult to move–just the feeling of my shirt touching my skin was too much. I remember sitting in my rocking chair in my sun room, giving my son an early Christmas gift to occupy him, and asking my daughter to help out with some of the caretaking to limit the amount I had to move.

When the pain continued to get worse, I went in to the doctor. After describing the type of pain (on the surface of my skin), and the place of the pain (from the center of my back all the way around to under my armpit), he diagnosed me with Shingles. I knew of the name of this ailment, but not the details, so I looked it up on Google. From everything I read, this was something that typically only affects the elderly. I was 37.

The doctor gave me anti-viral pills, and thankfully the Shingles went away without progressing to blisters. But that was just my first time. Over the next 12 months, I got shingles two more times. Once on my scalp and ear, and the next time again on my torso. And this continues for several more years, where I get it on my face, my scalp, and my torso repeatedly, before I start to get to the bottom of what’s wrong.

Stay Tuned

Come back for part 5, where I’ll go into the myriad of misdiagnoses and unnecessary treatments that cost me an unfathomable amount of time, money, and suffering, in what was supposed to be the prime years of my life. I promise, eventually, there will be a happy ending to this story!