If you haven’t figured it out yet, I wear a lot of myself on my sleeve. Probably more than most and definitely more than what makes people comfortable. If you’re thinking that it’s some type of ethos that I’ve created for my blogging self, I hate to break it to you. It’s always who I’ve been. I remember standing with my grandad out on his front porch as he smoked a few Marlboro’s and I would go on and on about my classes in school and my violin lessons and tell him made up stories about how cool I was to the popular girls in the 5th grade. The levels of torture I put him through were probably immense. Actually, I don’t even have to reach back that far. I’m sure some of my friends and acquaintances can tell you how I’ve put them in an awkward situation after I blurted out how my new anti-depressant has made me gain 15 pounds in last 12 weeks. Okay, see. There I go.
But since I brought up my anti-depressant, I guess I should just stay on that subject. You know, for the sake of awkwardness. This is my first go round on this type of medication and it’s been quite a road to get me to this point where I needed it. Probably since birth. No, even farther than that. Probably all the way back to my grandmother, or her dad, or even his mom. Who knows, really. All that matters is that somewhere along the way evolution played a dirty joke on some of my family’s genes and created one that has become affectionately known to us as the “BooBoo Gene.” At a really young age, before words were my thing, I nicknamed my maternal grandma “BooBoo.” There’s really no reason or story to it. I looked at her, bestowed her new name upon her and it stuck. Even today in her coffin there is a heart shaped pillow with the name BooBoo embroidered across the front of it. Just like a heart tattoo that you’d see with “mom” written on it. BooBoo had a lovely but also a very difficult, and in many ways, tragic life. Some of her life’s details aren’t for me to tell. They aren’t for anyone to tell. They’re her’s and her husband’s and her children’s. But as for me and my inherited BooBoo Gene, what should be told is that she had many mental struggles and disorders. The type that hurt her and her family and left a few scars and genes. And as the stories go, she inherited some of them from her father, who had his own demons, and a few of her siblings have struggled with them in many manifest ways. I’ll skip a generation or two and just cut to me in 2011. Me and my journey with my BooBoo Gene.
In 2011, I was 26 and I had a 2 year old and a 1 year old. I was also finishing up my left behind bachelor’s degree. It was what I would like to call “the dark time.” Chaotic really. But all of my life, up until that point, I had been a mentally stable and very healthy person. That is until my back and left arm went all tingly and numb every time I tilted my head down. Reading, doing dishes, changing diapers, anything that made me bow my head gave me electric tingles down my arm. So, naturally, I went to the doctor. It took a few months, but I finally was diagnosed with Multiple Sclerosis. My mom and my aunt both have the disease so I was very familiar with it. But familiarity didn’t stop me from crying in the shower for a few weeks. The sweetest memory I have from “the dark time,” is of my husband, Jason. He had never been a coffee drinker. He hated its bitter taste and often would give me a hard time for drinking it. But when I was diagnosed with MS and the possibility that I could one day walk with a cane or need a wheelchair before I was old enough for it to be cool, he started drinking it with me. He heaped the sugar and cream in it and he looked at me and said that he was going to drink it with me in our kitchen together when we’re too old to walk. All because he wanted to do something with me that I love forever. So, we drank coffee together and we moved forward.
This story is more difficult to tell. A few months after I was diagnosed with MS it was the beginning of 2012. We bought our very first house, my grandfather passed away, my oldest son turned 3, we got a dog, and I began to turn yellow. Well, actually, before I turned yellow, I lost my appetite, I couldn’t keep food down, I could hardly stand, I graduated college, and then I turned yellow. That’s when I decided to go to the emergency room. My memories of this time are far more sporadic and broken. I know that when I wasn’t dragging myself to classes, I was laying on my couch in that space between awake and asleep while my 3 year old and 1 1/2 year old climbed all over me while they ate Cheerios and watched Curious George. I remember waking up in the mornings, walking down stairs, pouring the boys their cereal and leaning over the kitchen counter almost unable to stand, all with my back and arm tingling. The day I went to the emergency room because my eyes were yellow, I didn’t know what to expect. I didn’t know what the diagnosis was for a yellow person. I don’t think I really even cared. What they told me was that my liver enzymes were over 2,000 when they were supposed to be under 40. So, I had severe acute hepatitis. (Not the Pamela Anderson kind. Click the link to get educated about it). But no one knew why. For a year and a half, no one knew. My GI doctor left me to my own devices and I got a bit better on my own, until in the spring of 2013 when I began to lose my appetite again, I couldn’t keep food down, I was severely exhausted, and lo and behold, I was turning yellow. By that time, I was in graduate school with a 4 year old and a 2 1/2 year old. Still chaotic. Still dark. After a couple of liver biopsies, I got a phone call from my GI doctor telling me that I had autoimmune hepatitis. It’s a fairly rare chronic disease that can lead to liver failure and death if left untreated. They explained that I had moderate scarring on my liver, but with treatment and time, it would heal. I sat hunched over on the concrete stairs to the porch of our house with the phone to my hear and tingles running down my arm. This diagnosis was the the one that sent me crying in the shower for a few months. I was so scared. It left me with so many questions and fears. Mostly with the fear that my treatment wouldn’t work and I would need a liver transplant or would die of cirrhosis. It took me to a place mentally that I had never gone before. And I think since that diagnosis, I have never been the same.
Post Partum Pre-Eclampsia
You guys, I totally got better. I responded to the treatment so quickly and so well. I was on it for a year and I felt great. It was the spring of 2014. I was eating. I wasn’t yellow. But, you know, sometimes, my husband and I are crazy. Like, the kind of crazy where we say, hey, I know we’ve been through a lot and I’m still in graduate school, but, let’s have one last baby. You know, for shits and giggles. With the blessing from my doctors, we had sex, probably great sex, and made a baby. The pregnancy went so well. I had some high blood pressure, but they put me on medication to help keep it down and no one was worried. Not until the end. I graduated with my master’s degree and I was soon put on bedrest at 34 weeks pregnant and stayed there for 3 excruciating weeks. It was now 2015 and my doctor said, okay, enough is enough. Your blood pressure is just too high. Let’s get ‘er done. And she came. Our daughter came to us. And my god were we all so happy. After such a long, painful few years, we were all just so happy. They sent us both home and the weight of having 3 children sat on my chest and wouldn’t move. I was laying upstairs in my bed with my newborn baby and napped for a few hours to get rid of a bad headache and some chest pain. When I woke, it was worse. I asked Jason to check my blood pressure just to see if maybe that’s what was wrong. He put the cuff around my arm and pumped the rubber ball. He let go and his eyes grew big. Furrowing his brows together, he pumped again. He let go. His eyes were now scared. I told him to tell me. He wouldn’t. My heart beat faster and I demanded that he tell me. 210/190. I told him not to move. Nobody move. Don’t panic. Take the kids to the neighbor’s house and drive me to the emergency room at the hospital where I delivered Ruby. He ran and got the boys dressed. I remember kneeling downstairs in the foyer with my crying baby. Tears streamed down my face. My hands were trembling. I was trying to concentrate on not getting overworked, trying to prevent a seizure. And I nursed my baby. I closed my eyes and I sang my favorite hymn all the way to the hospital. The nurses at the ER didn’t believe me when I told them how high my blood pressure was. I sure shocked them. I was immediately wheeled away and injected with emergency medicine to bring my blood pressure down. And then they wheeled me back up to the maternity ward. I cried because I was back and this time I might not leave. I was put on magnesium, something invented by satan, but what surely saved my life. I was on it for 24 hours. It is meant to slow down your organs and body, opening up your blood vessels to help ease the pressure and prevent a seizure. But it slowed down everything. By the end of the 24 hours my eyes could not focus. I could not follow movement. I could not lift Ruby to my breast to nurse her. I could barely lift my head and arms. Once I was taken off the magnesium and given a recovery room, I stayed for a week while doctors tried to get my stubborn blood pressure down. It kept creeping back up to the 200’s/150’s. And they kept trying different combinations of medications to help. My chest was still aching. My head was still pounding. I was still sure that death was imminent. Visibly noticing my distress, the nurse intervened and gave me Xanax. All of a sudden I was Snow White. With a smile and a song, the windows flew open, a breeze drifted in, and birds perched and chirped on my fingers. It was around the same time that my blood pressure began to lower and after a few more days, I was sent home.
The BooBoo Gene: 2016
You’re probably wondering what this has to do with the BooBoo Gene. It’s been well over a year since I was in the hospital but I’m still on a good amount of blood pressure medication, and probably always will be. I struggled with quite a bit of post traumatic stress after I had Ruby. Every time my chest ached or a pain shot through my head, I was racked with fear. I was sure that I was a breath away from death. I distracted myself with work and applying for doctoral school, but it was always there. And I was driving myself crazy. On Christmas Eve, I very randomly found something about a dark stripe that had been on my thumb nail since I was pregnant with Ruby. And, as the internet usually does, all signs pointed to doom, gloom, and melanoma. That was it. I started panicking. I couldn’t breathe. I couldn’t sleep. I couldn’t eat. I couldn’t work. I was obsessed. I was filled with so much fear that I couldn’t think of or care about anything else. I went to a dermatologist who assured me it was benign. I didn’t believe him. I went to my primary doctor who also assured me that it was fine. I didn’t believe her. The moment that I yelled and screamed at Jason for not loading the dishwasher right and pushed him in our dinning room, I knew that I wasn’t okay. I went back to my doctor and sobbed in her office, spilling my last 5 years out onto the examination table. I was paralyzed with a fear of my body. It has betrayed me so many times. So many times I guessed the diagnosis and so many times I was right. So many times I distrusted a doctor and proved them wrong. And this time I was sure it was the same. But what I hadn’t guessed this time was that I was actually depressed and anxious. And rightfully so. She suggested that instead of a biopsy, what I needed was an anti-depressant. Something to help me see things clearly and to stop suffering. And it has. I could finally work. I could finally hug my kids. I could finally stop yelling at Jason.
After all of this, this whole long sad story, I keep thinking about BooBoo. About the poor mental health of my family and how I may have inherited some of it. How all of the trauma regarding my health in the past 5 years has unearthed parts of myself that span back generations. Hell, my diseases probably go back that far, too. I’m not embarrassed for needing medication to help my mind. I feel more free than I’ve felt in a very, very long time. (What’s funny is that I may be 15 pounds heavier because of it, but I could care less! Thanks anti-depressant! ) What’s important is that I’m alive. That I can take care of myself and my kids. I can look at my husband with love. I can work. It helped me get through my doctoral rejections. I’m not sure how I would have coped otherwise. So, more than being heavier, I’m thankful. I’m so thankful. I don’t know if this will be something that I struggle with for only a short time, or a lifetime. I’m planning on taking therapy to help me learn how to cope and learn strategies that will help to de-escalate my anxiety when it’s triggered. I also plan on watching. The pain and cycles of my family’s mental health has now caused me to be so much more aware of my own. I don’t want to repeat their cycles and I want to be proactive about getting myself help when I notice the BooBoo gene creeping in and making camp in my mind. I owe it to myself and to my family because I have years to deal with two chronic diseases and threats to my body.
And now it’s awkward between us, isn’t it?
In case you’re worried, I’m still watching the stripe on my thumb. I’m taking pictures of it every few months to compare. To make sure it doesn’t grow or change. I had a friend that said, “Are they just going to medicate you and not do a biopsy?!” I’m trusting that they know what they’re doing. But I’m also being my own advocate and being watchful. Thanks for caring. 🙂