Tuesday, April 24, 2012

I Saw It in the Mirror

Image found on Wikipedia

Omgrrrl left this comment on a recent post:

".......But I was wondering.
What was the MOMENT, the SYMPTOM that drove you over the edge and made you seek diagnosis? And what made you PURSUE diagnosis?"

What a great question. It's been awhile since I've thought back many years ago to the beginning of it all...

I've written about my path to diagnosis before, and it's probably a good time to resurrect a segment of that post:

Every Sjoggie has a different story to share, but here's how it all happened for me.
     In the fall of 2002, life slowly seemed to change for me, and I just couldn't put my finger exactly on what was going wrong. I had a job that I loved, my family was happy and well, and I felt as though I should have been living large and feeling fine, but overall, I felt lousy. Constantly. 
     Initially, I chalked my problems up to my age and my pudgy waistline. I began to be more careful with my diet and made an attempt to get more exercise, but in spite of my efforts, I felt as though I was becoming more unwell as the months went on.
     On an annual exam with my family doctor, I had brought along a lengthy laundry list of complaints, and bless her heart, Dr. H. pulled up a chair and reviewed each and every item on my list. My ears were constantly ringing, my eyes and mouth were dry, and my sense of smell had seemed to vanish. I was popping Tylenol and ibuprofen almost daily for aches and pains and the sensation that I was just on the edge of running a temperature. I had no energy to do anything but to go to work, then come home and collapse on the couch.
     And I was cranky as all get out.
     So she ordered lab work to screen for various problems and made a referral for me to see an ear-nose-and-throat doctor and an eye doctor.
     The ENT physician could find no structural problems that would cause a decreased sense of smell or tinnitus (ringing in the ears). My eye doctor noted that yes, indeed, my eyes were dry. She prescribed some eye drops. My labs showed that my thyroid not producing enough thyroid hormones, and I had an elevated sedimentation rate, which indicated some kind of inflammatory process.
     So I popped my Synthroid - replacement thyroid hormone - and tried every brand of eye drops that I could get my hands on for about six months. But in spite of continued discussions with Dr. H., I continued to feel as though I was slogging along through a giant bowl of jello, both physically and mentally. Routine tasks suddenly became difficult. I found myself checking and re-checking my work and second-guessing my decisions. My thought processes seemed to be slowed almost to a halt. I began to carry wads of kleenex in my pockets to mop my face since any small exertion left me sweating profusely and make up and mascara melted away. I knew these spells were not related to menopause since I had my ovaries and uterus removed several years previously and was already taking estrogen.
     I began a very expensive relationship with my dentist after multiple cavities began appearing in my teeth at my gum line. My dentist thought that my dry mouth may be causing the cavities, prescribed fluoride mouthwash and gave me the classic oral hygiene lecture. I also began to appreciate nitrous oxide during these uncomfortable appointments. (You can read more about my lucky shoes and nitrous oxide escapades here.)
     I was tired and miserable, and getting no answers. Then one day, my director of nursing took me aside. "So what's going on with your face, Julia?" she asked.
     Excuse me??
     "Have you noticed that well......you look as though you have the mumps? Here, look." She guided me to a nearby mirror.
     Whoa! No, I hadn't noticed that my face was swollen, especially right in front of my ears. But by then I was too tired to notice if my shoes were on the wrong feet. Or if my hair was purple. I didn't really care.
     "I want you to go home and get this checked out. Let me know what you find out - and feel better!"
     I dragged myself home and called Dr. H yet again. Later, I sat across from her in the exam room and cried. "I feel so awful. I know that this isn't the mumps since I had a whopper case as a kid. What is going on?"
     Dr. H. looked thoughtful. "I am going to have you seen by a rheumatologist. OK?"
     "Because you might have an autoimmune disease called Sjogren's syndrome. Your enlarged parotid glands made me think of it. I'm not sure about this, but a rheumatologist will know what specific labs to draw and how to get a diagnosis."
     What the heck is show - show - whatever you said syndrome? Never heard of it.
     "Most people haven't. And I might be wrong, but let's check it out."
     At my rheumatology appointment, Dr. S. explained that I did indeed have the classic symptoms of Sjs: dry eyes, dry mouth, enlarged parotids, fatigue, achey joints, and brain fog. Further labs showed that I had elevated c-reative proteins, positive ANA, and positive SSA/ro autoantibodies, all of which indicated that I had joined the Sjoggie club. She prescribed plaquenil and prednisone and so it all began......

In answer to Omgrrrl's question, if I had to choose a particular time and place in which I made the realization that I was seriously ill and that this illness should be named and treated, it would be that moment that my director of nursing pointed out my swollen parotids and basically told me not to come back to work until I had it figured out.

I was bumbling along exhausted and hurting and brain-fogged, so it seemed to take another person's perspective and observations to bring everything more clearly into focus. Until Kathleen literally stood me in front of a mirror and pointed out my enlarged parotids, I had just been living minute, by hour, by day, trying to just barely hang onto the life that I was used to living. As I stood in front of that mirror, suddenly I knew. My face had changed. My body had changed. My life had changed. And with that realization, I knew that I simply HAD to find out why.

How about you?


Leslie at SugarAndSpiceADK. said...

For me, it was the never-ending fatigue that I had never experienced before in my life, PLUS lots of tiny blood spots on my feet and legs (which I now know was caused by vasculitis, which can go along with Sjogren's)...thankfully, I have a wonderful GP who spotted my super high ANA titre (1280), and referred me to a rheumatologist, pronto...guess I was one of the lucky ones to get diagnosed relatively quickly! I've never had the swollen face glands, yet anyways......

sue said...

4 summers ago I broke out in spots from my knees to my toes on both legs. My family doctor sent me for blood work and referred me to an allergist. The allergist tested me for allergies (not a single one) and sent me for more blood work. When the results came in he told me I had an autoimmune disease and sent me to a rheumatologist. The rheumatologist sent me for a biopsy of the spots which had pretty much gone away at this point and the biopsy came back as a form of vasculitis. Because I had complained of my eyes being dry and and having a dry mouth, as well as all my blood work, he diagnosed me with sjogrens. I am on plaquenil and that is all other than motrin for occasional aches and pains. The vasculitis comes and goes occasionally, usually in the summer, but never as bad as it was 3 years ago before I got diagnosed. I see my rheumy once a year, more if I need to but things are pretty uneventful. All in all, it took 4 months to get a diagnosis. I've had swollen parotids once but they cleared up pretty quickly. I love your blog and I learned so much from it. Thanks for writing it.

annie said...

Although I had been diagnosed with chronic fatigue syndrome and fibromyalgia for over 5 years, I took a turn for the worse in 2007. I had trouble breathing, couldn't eat,couldn't even swallow water as it would give me heartburn and got tired of visiting all my doctors who all concluded there was nothing there. Even 5 ER visists concluded negative. My gastro had sent me for some blood work, after I had gone back to see him with some other gut complaints.When he got the results, he found some results puzzling and sent me to a hematologist and a nephrologist.

The nephrologist found some problem with my kidneys, which could be because of sjogren's. Thanks to the hematologist who found I had a lupus antibody. With that information,I rushed to my rheumatologist and he had the appropriate blood tests done and concluded I had sjogren's. My ANA is always negative, and my SSA/RO was only seen the one time, I've tested negative the other two times, but my sed rate is elevated and my rheumatoid factor is very high. That is a very short version of many years of running around to find a diagnosis while dealing with various strange and worrisome symptoms.

Thank you, Julia,for this community you've built...it has been a big help and comfort dealing with a very huge puzzle that is my health, and meeting women with similar stories.

Anonymous said...

Hi Julia- I loved todays post as your experience is similar to my own, except that I searched for a diagnosis for a long time. I am still working-barely limping along as you described. I wonder if you have any thoughts about disability to share with us. Everyone tells me that I should explore it because I feel awful and really am not able to do a good job the way I used to. My reading tells me that obtaining disability benefits is a long uncertain process and I am afraid to be without a job while I pursue it. I am 55 and have had Sjogren's (diagnosed) since 2008. Thanks for your posts- sometimes I feel closer to you than friends and family because they just don't understand this disease.

Gill from the other side of the Big Pond said...

This is SERIOUSLY interesting, tie this in with the post about a veggie diet, I had been looking for a defining point where things kicked in first. Dental problems have always been there, I know the lecture by heart I have heard it so many times. Tinitus hadn't figured in the equation before, now it makes me think, I was diagnosed with that nearly 40 years ago, I had been a veggie for several years by then. High pressure lifestyle got the blame for a lot of things that have happened since, contact lens problem was blamed for dry eyes must be 25 years ago (maybe more). Yet diagnosis was only last year, I casually mentioned a pain in my big toe to my dermatologist, I thought either arthritis or a broken toe, he suggested my GP send me to a rheumatologist, the rest is history. My GP was astounded that he hadn't spotted it with all the other odd symptoms (he is usually very good at joining the dots). My life is still very intense pressure with no let up, I get symptoms of extreme fatigue which make me feel as though I am trying to swim in custard but I still keep going, I don't have a choice. I may just be lucky and things are all going to crash around me, but could my survival be the high veggie intake? I do eat dairy products, i think a vegan diet is suspect in regards to calcium but all meat/fish are excluded. Are there any other long term veggies reading this? I echo everyone else, this blog is invaluable, togther we may be able to solve some things.

phsymom said...

Looking back now I feel that everything started right after I graduated High School. Over the years I went a more than a few rheumatologist thinking that I had some form or arthritis. The pretty much thought it was all in my head.

So I pushed forward and just kept going. One morning I woke up and my tongue was swollen and sore and had a white coating on it. When I went to my PCP, she said yeast/thrush and prescribed diflucan ... didn't work.

During this period I had these spots/rash come up on my arms. So my PCP decided to send me to an infectios disease doctor. Who after testing thought I had lupus and referred me to a rhuematologist.

Finally in 2005 (20 years after graduating)I was diagnosed with Sjogren's. I do not present in my blood work; but had a lip biopsy to confirm.

I'm still working, but with all my additiona medical issues it is getting difficult to do so. I'm not looking forward to the day I have to file for disability. I saw my Mom fight her way through it.

Hugs everyone.


phsymom said...

LOL, guess you can tell I'm in a bit of a brain fog today.

Laura Strom said...

I, too, woke up on Tuesday morning, looked in a mirror, and thought, "Do I have mumps???". Two days later I was in the hospital where I spent the next four days with acute parotitis. I have never been the same since.

Anonymous said...

Hi Julia, I started seeking a diagnosis 17 years ago shortly after giving birth to my 3rd & last son, & despite being put back on thyroid medicine I was always fatigued, had roving pains & occasional "stress" rashes (when I was young I was hyper, then became hypo after delivering the aforementioned baby, I also had a horrible respiratory infection at the time of delivery & wonder if it may have triggered the thyroid issue as well as the auto immune issues). What sent me over the edge & made me pursue a diagnosis was a combination of things: 1. feeling progressively "worse" 2. I had a couple of blood tests that showed low kidney function with no explanation & 3. realizing that if I wasn't self employed, I'd have been fired a long time ago! For 17 years I was given many different explanations as to why I was feeling the way I was...from "it's your age" (I was 36 at the time) to "you need to lose weight" or "you need an anti-depressant", but I finally found the right Dr. after 5 or 6 tries, & she ran a blood test which showed a positive ANA, sent me to a rheumy who ran another test which at first didn't show anything but a couple of years later and a lot more tests...Wa La! I was diagnosed with Sjogren's, along with a couple of other AI disorders...& it was confirmed that my age, weight, or mood didn't cause it...now I'm wishing I would have fired myself a long time ago!:)(& I'm also curious about what it takes to claim disability, especially if you're self employed)

cargillwitch said...

looking back like most here I have had autoimmune issues since my teens( I am 43 now).
At that time I had severe bouts of hyperthermic uticaria- not easy to deal with in Canada! This progressed to bad stomach issues and raynauds by my late teens. I became a vegetarian at 16 and things calmed down somewhat for a few years.
At 22 ( 5ft 4 and 115 pounds) I developed Deep vein thrombosis in mu upper thigh- as a young ,very active ,non-smoker the internist who handled my case was VERY puzzled. Looking back I am sure I had signs of anti-phospholipid then.
Four babies and many years latter I had a years worth of bladder infections that often didn't test as bacterialy related
( interstitial cystitis, I suspect now)
But life marches on! About 3 1/2 years ago I had an extreme bout with what was later diagnoses as IBS. My GP suggested I omit gluten from my diet and see what happened. It did settle the IBS down considerably so i have stuck with it.I started to have issues with my eyes in the mornings but chalked it up to cold air and perhaps make up getting in my eyes!
Last spring I began training for a 100km race- it was a crazy hectic time juggling full time work, a farm, commuting and 6 kids.I felt very tired - but who wouldn't! I did start to have issues with insomnia, noted muscles twitches and mouth ulcers that didn't seem to heal. Once again I thought I needed to slow things down - once the race was over and the farming season done I could get some rest . By late summer I was having crazy anxiety- as a nurse I could tell this was not related to emotional stimulus- it was pure adrenalin hits! Within days I had a serve bout of eye irritation whilst swimming with clients( I work with perinatal moms). It suddenly hit me- I had sjogrens.
My mother has it- my grandmother had it.
To be honest I didn't connect the dots as my mother also has lupus, RA and primary biliary cirrhosis. I equated many of her symptoms
( which i now know are sjogrens) to these other AI issues. I just walked into my GP's office and told her I knew what I had. Thankfully she agreed, and I saw a rheumatologist and opthamologist within a month and had a positive diagnosis.

Omgrrrl said...

Yipes All Mighty!

First of all, Miz Julia, thanks for addressing my question.

The comments that followed this blog has only strengthened my belief that SJ is SUPER complicated.

I am happy to read that many people had a doctor that honed in on the diagnosis.

Thank you for the post and love to you and all the SJ's that fight this good fight.


Lisa said...

Julia happening upon your blog has been a God send for me ... despite a supportive husband I have spent the past two years feeling very alone in dealing with a myriad of what would seem to most to be off-the-wall symptoms. In retrospect, there were subtle indications of AI issues as far back as 30 years ago ... mildly positive ANA, Lupus Anticoagulant during pregnancy, low WBC, etc. Two years ago, w/t onset of menopause,the bottom fell out. 17 cavities, all across the gum line, B-12 level < 200, hypothyroid. Internist referred to Rheum.... what felt like gallons of blood letting later came up w/strongly + ANA, SSa,RA Factor @ which point I entered the ranks of those whose claim to fame is SS and Fibromyalgia. A medical phobic to the extreme, I have tried to cope by reading everything I can get my hands on.My beloved husband, supportive as he is, views my research as second guessing my doctors but it helps to deal w/t fear everytime another symptom rears its ugly head.
And, Julia, I'm right there in the dental chair next to you as I am scheduled for a crown next week ...on the molar that decided to break apart like a polar iceberg.