I've been swamped this month - a week of out-of-town training, the Sjogren's Walkabout, my baby brother's graduation, and kicking off two engagements at work (one I'll be leading) only scratched the surface. I appologize for my absence.
Following some words of advice for when stuck in such a blogging dry spell, I revisited some of my original posts. Interesting, in rereading one about how I was first diagnosed with Sjogren's, I realized it would not only be convenient to repost it - it would be wise. I had few readers when I originally wrote this post nearly 2 years ago, and now with a more integrated audience across multiple social networks...well, I think it's time for a repost. Please check out my story - just one of the millions chronic patients could tell you - and remember that it is by sharing we make progress. By sharing our own stories and stories of our friends, we may spark the missing clue in someone's diagnosis puzzle!
My Diagnosis Trail (originally posted in September 2009, minor edits made for current info)
Everyone's diagnosis story is different. The average diagnosis time for my main condition (Sjogren's Syndrome...which is actually technically called Secondary Sjogren's Syndrome even though it's my 'primary' diagnosis because it occurred alongside other diagnoses) is 7 years and the typical patient getting diagnosed is a woman in her 40's. I was diagnosed at 15 which is very young, but that doesn't mean I was diagnosed quickly. (For reference, I am now 25.)
I can trace my symptoms back to 2 years old. At that age, I had so many chronic ear infections that they had to insert tubes to keep my ears draining. That alone is not so unusual for a toddler, but it was the first part of a loooong pattern. By 4 years old, I was experiencing intense leg pain, especially at night. The kind that kept me (and my parents) up overnight with my crying and thrashing. The pain wasn't just in my joints, but seemed to come from the center of my bones. There isn't much that can soothe that kind of pain, and at my age all they could give me medication-wise was Tylenol (I've never had much luck with Tylenol). My doctors finally did some imaging tests, but since they saw no breaks or tumors, they said I had "growing pains". These leg pains continued regularly ever since, though I now know the familiar onset symptoms and can intervene more effectively with ibuprofen.
By the time I reached school age, I was experiencing a regular cycle of infections throughout the year...respiratory infections including bronchitis, urinary tract infections, stomach bugs, and the eye problems started. Anyone familiar with Sjogren's knows the two most predominant symptoms are extreme dry eyes and dry mouth (but please don't assume that's all there is to this disease, I'll explain more later). My eyes were ALWAYS dry and gritty, I always thought there was something in my eye, and I produced a thick secretion. I constantly picked at and rubbed my eyes, which is something my classmates never understood but still remember to this day. Doctors gave me all kinds of drops and ointments, none of which made a dent into the discomfort. On top of all these things, I always felt sick in the morning when I got up for school. Many days, I wound up in the nurse's office with a stomach ache, and when I told her I did not eat breakfast (trying to eat in the morning itself made me nauseous), she decided I was trying to get out of class. I missed on average 20-30 days of class every year. My parents were my only believers, the teachers and administration tried to tell her I was a hypochondriac trying to get out of class...it was absurd! I LOVED school. I HATED missing time. Some days I still want to go back to my elementary school, find anyone who was working there when I attended, and hand them a list of my diagnoses and symptoms.
Then I hit high school. I had joined the color guard, which participated in band camp the two weeks prior to the beginning of the school year. We spent 8 hours each day for two weeks in the sun learning our show (with few water breaks or chances to reapply sunscreen). Once classes began, we rehearsed 3 hours Monday and Wednesday evenings, had football games on Friday nights, and spent 8-10 hours on Saturday rehearsing before going to our competition for the week (we finally got home around 1am most weeks). I had not spent much time in the sun growing up, but for my family that was normal. This was the first time I had gotten a real tan! It was also the most exercise I'd ever had (I played hockey in elementary school but other than that I was more of a book worm than an athlete). I had no way of knowing I had opened Pandora's box.
It is my personal opinion, based on research and experience, that the appearance of an autoimmune condition (of my diagnoses, Sjogren's, scleroderma, and possibly fibromyalgia are autoimmune conditions) is the result of a genetic predisposition and an environmental trigger. In another post I'll discuss my family history but for now suffice it to say we are RAMPANT with autoimmune disorders, and it turns out *tada!* the sun is my environmental trigger.
So to return to the color guard story, our season began with band camp in August and ended around Thanksgiving. At Christmas time that year (my freshman year of high school, 2000), my mom noticed a small bald spot near the back of my crown of my head. It was about the size of a pencil eraser. Since I had been pulling my hair back tight for guard, we figured I probably just needed to be careful and let it grow back, but we also kept an eye on it. By Easter time it was the size of a quarter and we started seeing dermatologists. The first one we went to looked at my from the doorway of the office and said "alopecia, nothing I can do" and walked away. Later, when I looked up 'alopecia', I found out that's really just a term for the symptom of hair loss, and has NOTHING to do with the cause. Obviously we went to another doctor. In the meantime, somehow we were directed to a rheumatologist (and I had begun having severe dehydration issues, serious enough for multiple emergency room visits and one overnight admission). That rheumatologist told me to insist that the next dermatologist do a biopsy of the area. At this point he was considering discoid lupus, along with other things. So, when I went to a new dermatologist who was convinced it was discoid lupus from a visual exam, I still asked her to do a biospy anyway. Good thing, the result was localized scleroderma.
Once we got the scleroderma diagnosis, everything sped up more. My rheumatologist was a doctor for adults, and though I was 15, he said he was not comfortable treating a pediatric patient. He helped direct me to a doctor at DuPont Hospital for Children, who happened to be world-renowned and a top doctor to boot. Once I got to DuPont, that doctor and his fellow (who would takeover as my rheumatologist when the original doctor finally retired) were a Godsend. They quickly came up with the Sjogren's diagnosis (and therefore, treatment plan), and over time pieced together many of the mystery symptoms I had been coping with.
I thought at first I'd have to give up everything I had just gained - I was told to stay out of the sun, use all kinds of sun protection, drink all the time to stay hydrated, and a million other things. When I joined the color guard (remember, the reason I had so much sun exposure in the first place), I became a new person in many ways. I had just started high school, found a niche (and one I was great at!), made a ton of new friends, looked better than ever...the list goes on. I saw it all slipping away - how could I be in color guard when I was supposed to stay out of the sun and drink water all the time (as I said, we had very limited water breaks)...oh and I forgot to mention that since the season extends into November, I had to battle the cold with my stiff arthritic joints, and especially with the Raynaud's diagnosis I was told to avoid this situation as well. It seemed that all doors that should have been opening were closing - travel plans, a social life, etc etc. However, my doctors were great. They listened to my fears and helped me through the adjustment period while also helping me figure out how to hang on to the things that were most important to me.
If you don't have chronic illnesses, please understand that this is only the story of how I got the first set of answers. After that year, I had a name (well, names) for my most pressing problems, but these conditions change. Over time, other diagnoses developed or came to light, and like most people I know in the II world, my diagnoses list has grown and probably will continue to do so. By definition, none of these chronic illnesses will ever go away, so I just have to keep adding. Conditions can mask or imitate each other, which adds to the confusion and evolving diagnoses list. However, getting through this stage was crucial. It was the point at which I was able to move toward control.