Out of thin air?
As I’ve been looking back over the last few years, searching for clues about where this mysterious disease seems to have come from, all of the pieces seem to fit together in an eerie way. I graduated from my undergrad and started teaching in 2001. Over the course of the next 3-4 years, I lived alone, started my master’s degree, and began the “search” for my soul mate. After MANY creepy coffee dates from match.com, I met Mike. We fell in love long-distance, talking for hours on the phone or IM every night. He lived in Austin, and I lived in Plano, so I became one of those weekend road warriors, loading up Fred the Ford with Mardi the Mutt and my overnight bag every weekend to barrel down I-35 to go visit Mike. Just months into our relationship, we knew things were developing seriously, and we were already planning the next stages of our relationship. By 2005, we were engaged, and in 2006, we got married in McKinney.
Around that time, my father had started showing some mysterious medical symptoms. I remember that on our wedding day, he was having difficultly going up and down the stairs, which was very strange for such an active man. At that time, his doctors weren’t sure what was going on with him. They thought he was just retaining water. One night - I can’t remember if it was before or after the wedding - I was at my parents’ house and gave my dad a hug in the kitchen. I remember running my hands over his lower back and being shocked at how hard his skin felt. I mentioned something about it to my mom, and her response was “oh yeah, his whole back is like that.” That night, I went home and started searching for “hard skin” online. I kept coming up with an odd autoimmune disease called scleroderma. Everything I saw said that the disease was not only extremely rare, but that it also generally affected women in child-bearing years. Well, that was two strikes, so I figured that couldn’t be it.
In late 2006, my father was called into the emergency room for a blood tranfusion. During the following weeks, my dad was poked, prodded, and tested in every way imaginable. Finally, a skin biopsy confirmed that he had scleroderma. This sent our family into a spiral. In typical Tucker fashion, we sprung into action, organizing blood drives, speaking on behalf of scleroderma awareness, and raising money for research. It was an awe-inspiring time. I saw a community wrap its arms around our family and hold us up in a time of difficulty. My mother’s strength inspired and amazed me, just as it does today. My father progressed through the stages of awareness and acceptance, and together as a family we grew closer.
My personal life, however, was starting to falter. I was struggling to deal with the realities of my dad’s medical situation. This man who had always been the “superman” in my life was the model I used to compare every other male in my life to. I found myself pushing impossible expectations on my husband Mike, wanting him to make everything just go away. We were in our first year of marriage, trying to learn to communicate, living and building a life together, all while dealing with the serious illness in my family. On top of those issues, Mike’s work was not going well. He had taken a job as a campus technology assistant so he could move back to Plano, and he was miserable. Every day was a challenge. Thankfully, he got into a better job at an insurance company, which he loved. The people were wonderful and kind, the hours and benefits were good, and the pay was much better.
Around the summer of 2007, I started noticing lumps on my shins. At first, I just thought they were shin splints, but after going to several doctors (general practicioner, infectious diseases, dermatologist, and rheumatologist), I had been tested for everything from Crohn’s disease to bone infections to leukemia. The final result from my biopsy was that I had idiopathic erythema nodosum, or inflammation of the subcutaneous tissue. The doctors assumed it was a side effect of my birth control pills, so I was told to stop taking those and began taking azathioprine to control my inflammation. From 2007-2010, I had random symptoms consistent with erythema nodosum, and - as it turns out - also Wegener’s granulomatosis. Joint pain, inflammation, hoarse voice, edema, and fatigue. However, there wasn’t any organ involvement, and I was having my blood checked every 3-6 months with no issues.
During that time, I also started seeing a counselor to help me deal with my stress. The chronic illness of my father, the extra committments at work, finishing up my master’s degree, my health scares, financial worries, and the adjustments to married life were taking their toll. Mike and I bought a house in 2007, and just a few months after closing, he was laid off from his job. He was able to find another job quickly, but then another year later, he was laid off again. This time, we weren’t so lucky. He was laid off for a total of 1 1/2 years, and I found myself growing more and more tired.
Everything could be explained rationally, though. I was working 50-60 hour weeks, so of course I was tired every night at 8pm. My legs were swelling, but I was on my feet all day, I’m a teacher, and I’m overweight, so that all made sense. My nose was stuffy all the time, but we lived in Texas and allergies frequently kicked my rear. Independently, nothing seemed significant. Together, though, it felt like everything was part of a larger puzzle. I couldn’t shake this feeling that something just wasn’t right.
In October, I had a case of shingles pop up on my right side. I remember telling Mike that I felt like my body was attacking me, and how frustrated I was because I didn’t know what I had done to make it so angry. After all, this had to be my fault, right? The shingles were followed by a nasty case of bronchitis, and then a clogged salivary gland. I felt like I was becoming one of those high-maintenance hypochondriatics. But when I saw some really wonky lab results from my blood work at the end of October of 2010, I knew I wasn’t delusional. There really was something else going on. Over the course of the next couple of months, doctors consumed my every thought and free moment of the day. I spent my winter break doing tests and visiting with specialists.
I remember going to see my nephrologist and saying to him in a joking manner, “You’re going to tell me that I have some odd disease named after some random guy, aren’t you?” He smiled, tilted his head, and confirmed that he believed I had Wegener’s granulomatosis. He told me to stay away from the Internet until they could confirm things with a kidney biopsy. Of course, I was on my phone the second I got in the car, searching for this guy Wegener.
I think the most important part of what I learned during that time was how much impact stress can have on our health. Truly… My father feels very sure that his medical situation is a direct result of high levels of stress. My illness arose directly following a time of immense stress. It feels like there’s a trigger there, something latent right below the surface, and all it needs is a good weak moment to spring forth and take hold.
I had spent years “pushing through the pain” and trying to deny that inner voice. As women, particularly women who struggle with things like weight, we are professionals at telling ourselves to shut up and keep going. We quiet that inner hunger inside ourselves, whether it’s a hunger for that piece of cheesecake, that extra hour of sleep, or even that afternoon to ourselves. As women we often see those things as self-indulgent and silly. My goal right now is to reconnect with that voice. It had been trying to tell me - for years - to listen and get help. But I didn’t. I put on my big girl panties, I “firmed up”, “sucked it up”, and “pushed through”. I realize that there’s nothing I really could have done to prevent this illness, but I do think I could have caught it sooner if I had listened a little more, quieted my own inner thoughts and motivations, and truly heard what my body was trying to tell me.
So now I’m here, and trying to be quiet, so I can listen…
Around that time, my father had started showing some mysterious medical symptoms. I remember that on our wedding day, he was having difficultly going up and down the stairs, which was very strange for such an active man. At that time, his doctors weren’t sure what was going on with him. They thought he was just retaining water. One night - I can’t remember if it was before or after the wedding - I was at my parents’ house and gave my dad a hug in the kitchen. I remember running my hands over his lower back and being shocked at how hard his skin felt. I mentioned something about it to my mom, and her response was “oh yeah, his whole back is like that.” That night, I went home and started searching for “hard skin” online. I kept coming up with an odd autoimmune disease called scleroderma. Everything I saw said that the disease was not only extremely rare, but that it also generally affected women in child-bearing years. Well, that was two strikes, so I figured that couldn’t be it.
In late 2006, my father was called into the emergency room for a blood tranfusion. During the following weeks, my dad was poked, prodded, and tested in every way imaginable. Finally, a skin biopsy confirmed that he had scleroderma. This sent our family into a spiral. In typical Tucker fashion, we sprung into action, organizing blood drives, speaking on behalf of scleroderma awareness, and raising money for research. It was an awe-inspiring time. I saw a community wrap its arms around our family and hold us up in a time of difficulty. My mother’s strength inspired and amazed me, just as it does today. My father progressed through the stages of awareness and acceptance, and together as a family we grew closer.
My personal life, however, was starting to falter. I was struggling to deal with the realities of my dad’s medical situation. This man who had always been the “superman” in my life was the model I used to compare every other male in my life to. I found myself pushing impossible expectations on my husband Mike, wanting him to make everything just go away. We were in our first year of marriage, trying to learn to communicate, living and building a life together, all while dealing with the serious illness in my family. On top of those issues, Mike’s work was not going well. He had taken a job as a campus technology assistant so he could move back to Plano, and he was miserable. Every day was a challenge. Thankfully, he got into a better job at an insurance company, which he loved. The people were wonderful and kind, the hours and benefits were good, and the pay was much better.
Around the summer of 2007, I started noticing lumps on my shins. At first, I just thought they were shin splints, but after going to several doctors (general practicioner, infectious diseases, dermatologist, and rheumatologist), I had been tested for everything from Crohn’s disease to bone infections to leukemia. The final result from my biopsy was that I had idiopathic erythema nodosum, or inflammation of the subcutaneous tissue. The doctors assumed it was a side effect of my birth control pills, so I was told to stop taking those and began taking azathioprine to control my inflammation. From 2007-2010, I had random symptoms consistent with erythema nodosum, and - as it turns out - also Wegener’s granulomatosis. Joint pain, inflammation, hoarse voice, edema, and fatigue. However, there wasn’t any organ involvement, and I was having my blood checked every 3-6 months with no issues.
During that time, I also started seeing a counselor to help me deal with my stress. The chronic illness of my father, the extra committments at work, finishing up my master’s degree, my health scares, financial worries, and the adjustments to married life were taking their toll. Mike and I bought a house in 2007, and just a few months after closing, he was laid off from his job. He was able to find another job quickly, but then another year later, he was laid off again. This time, we weren’t so lucky. He was laid off for a total of 1 1/2 years, and I found myself growing more and more tired.
Everything could be explained rationally, though. I was working 50-60 hour weeks, so of course I was tired every night at 8pm. My legs were swelling, but I was on my feet all day, I’m a teacher, and I’m overweight, so that all made sense. My nose was stuffy all the time, but we lived in Texas and allergies frequently kicked my rear. Independently, nothing seemed significant. Together, though, it felt like everything was part of a larger puzzle. I couldn’t shake this feeling that something just wasn’t right.
In October, I had a case of shingles pop up on my right side. I remember telling Mike that I felt like my body was attacking me, and how frustrated I was because I didn’t know what I had done to make it so angry. After all, this had to be my fault, right? The shingles were followed by a nasty case of bronchitis, and then a clogged salivary gland. I felt like I was becoming one of those high-maintenance hypochondriatics. But when I saw some really wonky lab results from my blood work at the end of October of 2010, I knew I wasn’t delusional. There really was something else going on. Over the course of the next couple of months, doctors consumed my every thought and free moment of the day. I spent my winter break doing tests and visiting with specialists.
I remember going to see my nephrologist and saying to him in a joking manner, “You’re going to tell me that I have some odd disease named after some random guy, aren’t you?” He smiled, tilted his head, and confirmed that he believed I had Wegener’s granulomatosis. He told me to stay away from the Internet until they could confirm things with a kidney biopsy. Of course, I was on my phone the second I got in the car, searching for this guy Wegener.
I think the most important part of what I learned during that time was how much impact stress can have on our health. Truly… My father feels very sure that his medical situation is a direct result of high levels of stress. My illness arose directly following a time of immense stress. It feels like there’s a trigger there, something latent right below the surface, and all it needs is a good weak moment to spring forth and take hold.
I had spent years “pushing through the pain” and trying to deny that inner voice. As women, particularly women who struggle with things like weight, we are professionals at telling ourselves to shut up and keep going. We quiet that inner hunger inside ourselves, whether it’s a hunger for that piece of cheesecake, that extra hour of sleep, or even that afternoon to ourselves. As women we often see those things as self-indulgent and silly. My goal right now is to reconnect with that voice. It had been trying to tell me - for years - to listen and get help. But I didn’t. I put on my big girl panties, I “firmed up”, “sucked it up”, and “pushed through”. I realize that there’s nothing I really could have done to prevent this illness, but I do think I could have caught it sooner if I had listened a little more, quieted my own inner thoughts and motivations, and truly heard what my body was trying to tell me.
So now I’m here, and trying to be quiet, so I can listen…
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