"So, you have tested positive for lupus," she said matter-of-factly--this woman about my age looking intently at her laptop, as we sat together as strangers in a tiny room with a couple of chairs and an examination table.
"But I was told by my general practitioner that I had Sjogren's Syndrome," was my protest, which was not exactly true because I had not heard the news from my doctor but from his assistant who called and rather nonchalantly mentioned I now had an incurable, chronic disease. This new doctor, a rheumatologist to which I had been referred, must have sensed my rising panic, especially since she was telling me I now had two incurable, chronic diseases, and instead of entertaining any of the questions that I had almost a month to formulate, said we would talk after further lab tests, x-rays, urine specimens and whatever else were thoroughly evaluated. In other words, I would be waiting another three weeks.
How I arrived at this place in life is still somewhat of a mystery. About a year ago I started to feel worn out and attributed it to the schedule I was on: following my boys in all of their sporting and musical events; working a part-time job while keeping an art business going; and volunteering to be on three boards with regular meetings and expectations. Eating right, sleeping enough hours and exercising regularly sometimes are not at the forefront of one's life when so many immediate needs present themselves. I did what I could to keep up.
Sometime last October I developed a toothache like none other and on Halloween I was treated to my first root canal--a trick, not a treat. Still not feeling my best I figured my hypothyroidism was acting up--a chronic condition I have been dealing with for the past ten years. There also loomed before me the dreaded menopause with all of the changes that accompany it. So many reasons to not feel great and yet no clear answers.
Six months after the first root canal it was apparent that my tooth had become infected so root canal number two was scheduled. A couple of weeks later came root canal number three, technically more of a repair--all on the same tooth, the one that meets the other tooth that allows my open bite mouth to chew food. After over fifty years of use, maybe the orthodontist I saw when I was 16 was right when he predicted I would be gumming my food by the time I was 40. The idea of braces at the time would have affected my flute playing which caused me great angst and my parents were not eager to spend the money, especially when fixing an open bite is not guaranteed. So I continued to go on not being able to chew correctly and not worrying about it.
Trying to make it through my son's senior year began to feel like a death march and by the time our college-aged son had returned home to take over the front room and half the dining room table, I was ready to give in to the clutter and seek to find rest instead of fighting a losing battle to keep the house in any kind of orderly fashion. Hoping to restart a regular exercise regimen to try to regain my strength was a short-lived hope as my husband found a summer job and my son decided to take summer classes, leaving me with no transportation to the gym. I ran until it was too hot outside and tried to get to the pool whenever I could, but the fatigue and joint pain just got worse.
By this point my endocrinologist intervened, taking me off the natural hormone I need to regulate my metabolism and prescribed a synthetic one. I was in too much of a fog by that point to understand what it was he was doing--until the bottom nearly fell out of my life. I no longer could sleep and would cry uncontrollably with little or no provocation. I gained 10 pounds in one month. Depression, a symptom of inadequately treated hypothyroidism, spiraled me to a level I had not before reached. I was becoming someone I was not meant to be, I explained, as I told my doctor I would not be taking any more synthetic hormones. Ever. But the numbers are normal, he explained. I, however, was not.
I began to wonder if this pain I was in was real or imagined. I do not want to be sick. I want to go running. I want to lose weight. I want to have an overall sense of well-being. I am not depressed. Though I do not tend to have the most cheery of dispositions, I am a writer so that is to be expected. This is what I kept telling myself. Whenever I tried to pray, I cried. I had no words that could adequately explain what it was I was hoping for. Whatever it was, I certainly did not think it would be chronic diseases that would perhaps eventually take away my ability to use the very gifts God has given me. I felt like life as I knew it was ending ever so gradually.
Last Tuesday I went back to receive the final diagnosis from the rheumatologist. I was bracing myself for anything from lupus to lymphoma. What is the worst that can happen? I asked myself. Well, I could die. No, I decided, that would not be the worst. The worst would be living with a chronic, debilitating disease that would shut down the reasons for joy in this life. Having people tell me I am brave after I would learn to withhold my emotions so they would not see me feeling desperate, was not something I was looking forward to. Explaining to my friends and loved ones that the woman they once knew no longer exists was something else that burdened me as I am usually the one others turn to for bearing their burdens. It is what it is. I sat waiting with my throbbing head, having scheduled another root canal.
"You do not have lupus and the only test that showed any abnormality was for Sjogren's and it was so slight, I am not diagnosing you with that either," she said. What?! Though I was excited for this good news, I also reminded myself that this is specifically why I am not fond of the medical community. For almost two months I have been on death row, in my mind. I have walked myself through all sorts of scenarios, none of them particularly heroic or brave. I have cried out to God and have had times of silence wondering what I would do if. Nevertheless, I was not abandoned and at times I felt the Spirit of God embracing me in ways more powerfully than I have ever experienced. Contemplating an eternity in heaven is not all that scary. It is the process it takes to get there that gives one pause.
Instead of a fourth root canal, the dentist performed an apicoectomy in which the infected roots are cut from the tooth and the tooth magically continues to stay in my head, or at least that is the plan for now. My mouth hurts and my lip is swollen. I took the day off to gather my thoughts, prepare for a meeting and hopefully do some sewing as the holiday season will soon be upon us. My dentist said that a chronic fatigue condition sometimes develops when a tooth remains infected over a period of time. My health may yet prevail. Or at least maybe I can find a way to make peace with a new kind of normal.
"But I was told by my general practitioner that I had Sjogren's Syndrome," was my protest, which was not exactly true because I had not heard the news from my doctor but from his assistant who called and rather nonchalantly mentioned I now had an incurable, chronic disease. This new doctor, a rheumatologist to which I had been referred, must have sensed my rising panic, especially since she was telling me I now had two incurable, chronic diseases, and instead of entertaining any of the questions that I had almost a month to formulate, said we would talk after further lab tests, x-rays, urine specimens and whatever else were thoroughly evaluated. In other words, I would be waiting another three weeks.
How I arrived at this place in life is still somewhat of a mystery. About a year ago I started to feel worn out and attributed it to the schedule I was on: following my boys in all of their sporting and musical events; working a part-time job while keeping an art business going; and volunteering to be on three boards with regular meetings and expectations. Eating right, sleeping enough hours and exercising regularly sometimes are not at the forefront of one's life when so many immediate needs present themselves. I did what I could to keep up.
Sometime last October I developed a toothache like none other and on Halloween I was treated to my first root canal--a trick, not a treat. Still not feeling my best I figured my hypothyroidism was acting up--a chronic condition I have been dealing with for the past ten years. There also loomed before me the dreaded menopause with all of the changes that accompany it. So many reasons to not feel great and yet no clear answers.
Six months after the first root canal it was apparent that my tooth had become infected so root canal number two was scheduled. A couple of weeks later came root canal number three, technically more of a repair--all on the same tooth, the one that meets the other tooth that allows my open bite mouth to chew food. After over fifty years of use, maybe the orthodontist I saw when I was 16 was right when he predicted I would be gumming my food by the time I was 40. The idea of braces at the time would have affected my flute playing which caused me great angst and my parents were not eager to spend the money, especially when fixing an open bite is not guaranteed. So I continued to go on not being able to chew correctly and not worrying about it.
Trying to make it through my son's senior year began to feel like a death march and by the time our college-aged son had returned home to take over the front room and half the dining room table, I was ready to give in to the clutter and seek to find rest instead of fighting a losing battle to keep the house in any kind of orderly fashion. Hoping to restart a regular exercise regimen to try to regain my strength was a short-lived hope as my husband found a summer job and my son decided to take summer classes, leaving me with no transportation to the gym. I ran until it was too hot outside and tried to get to the pool whenever I could, but the fatigue and joint pain just got worse.
By this point my endocrinologist intervened, taking me off the natural hormone I need to regulate my metabolism and prescribed a synthetic one. I was in too much of a fog by that point to understand what it was he was doing--until the bottom nearly fell out of my life. I no longer could sleep and would cry uncontrollably with little or no provocation. I gained 10 pounds in one month. Depression, a symptom of inadequately treated hypothyroidism, spiraled me to a level I had not before reached. I was becoming someone I was not meant to be, I explained, as I told my doctor I would not be taking any more synthetic hormones. Ever. But the numbers are normal, he explained. I, however, was not.
I began to wonder if this pain I was in was real or imagined. I do not want to be sick. I want to go running. I want to lose weight. I want to have an overall sense of well-being. I am not depressed. Though I do not tend to have the most cheery of dispositions, I am a writer so that is to be expected. This is what I kept telling myself. Whenever I tried to pray, I cried. I had no words that could adequately explain what it was I was hoping for. Whatever it was, I certainly did not think it would be chronic diseases that would perhaps eventually take away my ability to use the very gifts God has given me. I felt like life as I knew it was ending ever so gradually.
Last Tuesday I went back to receive the final diagnosis from the rheumatologist. I was bracing myself for anything from lupus to lymphoma. What is the worst that can happen? I asked myself. Well, I could die. No, I decided, that would not be the worst. The worst would be living with a chronic, debilitating disease that would shut down the reasons for joy in this life. Having people tell me I am brave after I would learn to withhold my emotions so they would not see me feeling desperate, was not something I was looking forward to. Explaining to my friends and loved ones that the woman they once knew no longer exists was something else that burdened me as I am usually the one others turn to for bearing their burdens. It is what it is. I sat waiting with my throbbing head, having scheduled another root canal.
"You do not have lupus and the only test that showed any abnormality was for Sjogren's and it was so slight, I am not diagnosing you with that either," she said. What?! Though I was excited for this good news, I also reminded myself that this is specifically why I am not fond of the medical community. For almost two months I have been on death row, in my mind. I have walked myself through all sorts of scenarios, none of them particularly heroic or brave. I have cried out to God and have had times of silence wondering what I would do if. Nevertheless, I was not abandoned and at times I felt the Spirit of God embracing me in ways more powerfully than I have ever experienced. Contemplating an eternity in heaven is not all that scary. It is the process it takes to get there that gives one pause.
Instead of a fourth root canal, the dentist performed an apicoectomy in which the infected roots are cut from the tooth and the tooth magically continues to stay in my head, or at least that is the plan for now. My mouth hurts and my lip is swollen. I took the day off to gather my thoughts, prepare for a meeting and hopefully do some sewing as the holiday season will soon be upon us. My dentist said that a chronic fatigue condition sometimes develops when a tooth remains infected over a period of time. My health may yet prevail. Or at least maybe I can find a way to make peace with a new kind of normal.
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