Sunday, May 26, 2013

How I Arrived Here: My Diagnosis. What's Yours?

A reader asked recently: I think I have read almost everything on your blog, but I have not seen anything about your story of your diagnosis.  Did I miss it?  If not, it might be a good subject for us newbies.

Hm. I know that I've written about this topic before, but I think it HAS been quite awhile.

Here's how I introduced myself and my brand spankin' new blog on MARCH 26, 2008. Wowsers. Five years ago. Seems like yesterday:

I'm Julia - and today is a good day. I'm feeling reasonably well. 
Welcome to my blog. I'm a fifty-something woman living in the Pacific Northwest. Five years ago my life changed dramatically. I went from being an active, independent, working lady to someone who spends much of her time carefully measuring her energy levels and matching activities to those levels. I was diagnosed with a chronic disease.
My specific illness is Sjogren's Syndrome, an autoimmune disease. This disease causes my body to create antibodies which attack my own tissues. These autoantibodies attack the glands which secrete tears, saliva, and mucous. The disease also can cause debilitating fatigue, joint pain, and depression.  Sjogren's is similar to Rheumatoid Arthritis and Lupus. Some studies state that approximately 10% of those with Sjogren's go on to develop Lymphoma. 
If you saw me today, other than thinking maybe that I need a better hairdo and eyebrows waxed, you probably wouldn't suspect that I have Sjogren's. I get around pretty well, don't have green or purple spots anywhere, and usually manage to dress somewhat appropriately. Underneath this mild mannered exterior, however, lurks a seriously cranky woman. I deal with eyes that constantly feel like sandpaper, a mouth and lips always dry, and most significantly, bone crushing fatigue. Occasionally my saliva glands become enlarged and painful, and all my symptoms increase dramatically. Those periods are frequently referred to as "flares". I have learned over the years that when I am in a flare, I am in bed. Period.  
Sjogren's has been an expensive disease. It has cost me my job, several friends, most of my hobbies, and a big chunk of my sense of humor. Thankfully, it has also strengthened my bond with my husband, family, faith, and my closest friends.

My blog isn't intended to garner sympathy, or evoke pity. My goal is to provide a place to share information which may help me and others with chronic illness. In exploring information and experiences, one can hope for many more reasonably well days. 
See you tomorrow

Well, now. Sounded a bit serious and pompous back then, didn't I? Ah, but that's before I allowed my true doofus-ness to reveal itself. Which didn't take long:

So there I was, sprawled out, head down, feet up, mouth open, with all kinds of dentistry equipment sticking out of my mouth. I have had enough work done on my teeth in the last five years that I have a running gag with the dental staff. They said that I've qualified for a frequent flier program of sorts. 
Gee thanks. Wish that actually translated into a free crown or two. 
Lack of spit does disgusting things to one's teeth.  
Nitrous oxide, however, makes all things tolerable in the dentist's chair. Not only tolerable, but even mildly amusing. I was trying to hum "Yellow Submarine" around at least a pound of gauze and another two pounds of hardware.  I love nitrous.  
The dentist was called away mid-procedure, so I was left alone for a few minutes blissfully babbling and inhaling deeply.  
In my warm fuzzy little drug induced cloud, two large red objects swam in and out of view, capturing my attention. Well, good golly. They were shoes. MY shoes. I had never noticed before how attractive they were, even if they were a dainty size eleven. (I am not kidding - size eleven. I have some serious real estate attached to the end of my legs). Dang, I thought. I have great taste in shoes.  
When Dr. E. returned, I was engrossed in examining every detail of those shoes. Red canvas. White stitching. Elastic curly laces. Who knew they were so interesting??  
As Dr. E. returned to my chair, I shoved one foot near his face and declared, "Would you just LOOK at these shoes? These are great shoes. Wonderful shoes. They're my very luckiest shoes!" 
Well, that's what I said. Actually, what came out of my mouth around all the equipment probably sounded like "wffwwuuuulOOOOOOkshOOOz!!!"  
Dr. E. deftly reached past the floating size elevens and turned down the nitrous. Rats.  
He still asks me where my lucky shoes are each time I visit.
And then there's this post, in which I introduce my BICJ (Bratty Inner Child Julia) for the very first time to my unsuspecting readers:

I am told that everyone has an inner child, and this child represents that side of themselves which is playful, creative, uninhibited, and innocent. 
I want one of those. My inner child is a brat. For example: 
Me: OK. I know that eating lots of sugar and fat will only make life more difficult for me, so I am going to push this shopping cart right past the giant M&M cookies in the bakery. 
Inner Child Me: Grabs a dozen cookies and runs to the checkout. Chomps one cookie before they are paid for. Greets cashier with a mouthful of crumbs.  
Me: Time to get up, Julia.  
Inner Child Me: "No way, dodo head!" Burrows under covers and goes back to sleep. 
Me: Look at this great yoga DVD!  
Inner Child Me: Throws self onto Couch and digs in heels. "I'm not moving and you can't make me. Nanner nanner nanner." Sticks out tongue.  
What is a person to do with an undisciplined naughty inner kid? Put it in time out? How would that work? Withhold an allowance? (Better not mention that one to John...). And we're not going to consider spanking. That would be just plain weird. I may have to consider bribery if all else fails.  
In the meantime, I'm going to have to settle for a stern warning. So listen up, you young stinker inner child: I have had enough, young lady. I will not tolerate any more shenanigans, Missy. Do you hear me? Don't make me stop this car!  
That ought to do it.

Yeah....right about then I let my true colors show. But I suppose these little trips down memory lane don't say much about my actual diagnosis. Which is what the reader really wanted to know and the topic of this post, written back in January of 2010:
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. 
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 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...... 
It took about one year for me to get a diagnosis, and an additional three months before my medications began to take noticeable effect. And as every Sjoggie knows, a diagnosis does not translate to living happily ever after. The last seven years have been a rollercoaster ride of highs and lows. 
So - what is so therapeutic about having a physician say these magic words, "Your diagnosis is...."? 
It's relief that what is unknown is suddenly known. That you are not crazy, lazy, or a hypochondriac. A diagnosis doesn't make the symptoms of Sjogren's syndrome less difficult, but it does give them a legitimacy of sorts. The first time that I saw the words, "autoimmune fatigue due to Sjogren's syndrome" written in my chart I felt a very strange sort of satisfaction. Heck, yes. I am tired and sick and there IS a reason for it all. 

 So that's my story.

What's yours?


Heda said...

I too remember the feeling that come with diagnosis...a mixture of relief at knowing what was wrong and devastation that what I though was a healthy, functioning body was not. Ah well. Hasn't killed us yet!

One Woman's Journey - a journal being written from Woodhaven - her cottage in the woods. said...

Oh yes
when a name came with the diagnosis
--seems I felt some relief.
I have all you share and 5 years ago began to think I was losing my mind. My wonderful children that love me have commented many times
"all you do is talk about your health."
Dear friends who suddenly are disappearing have commented "never heard of Sjogrens - what is it."
When I try to explain they look at me oddly. The small hometown I have returned to has doctors who are not familar with what I am going through.
So pleased I have found others to share with.
Again, I will say I am so thankful
I did not have this in full force
unti my late 60's. Was told for years to chew gum, suck on lemon drops and take Advil and maybe I needed something for my nerves.
I do agree with my son who lives in Thailand that I need to pace myself, rest more and my life of continual busyness needs to stop.
I am saving this entry for my well educated and loving children to read...

ShEiLa said...

I don't think I have ever written my diagnosis story... I will have to do that.

I can say I started showing symptoms of an auto-immune or mixed connective tissue disease early in 2005. My sed rate was 47. After a positive ANA my primary doc referred me to a rheumatologist. After several years of seeing that rheumy and no answers my primary doc thought I should get a second opinion and he gave me some options. I chose the University of Utah Rheumatology Department and within one visit and set of tests I got my diagnosis. Finally! 2011 after more than 6 years of symptoms and knowing something is wrong but not being validated by the medical profession.

Like you Miss Julia I was prescribed Plaquenil right away. My asthma makes Salagen out of the question. (It exacerbates my asthma.) They have not put me on prednisone for Sjogren's but have had short courses of treatment for my asthma. I have been lucky not to have the dental complications you have... But the exhaustion and inability to complete tasks I used to take for granted. I have had to learn to live with my limitations.

Being in the company of other people with Sjogren's helps... Especially this blog and seeing that I am not alone in the auto-immune battle... Thanks Julia! You have been wonderful!


Gill said...

Have had dental problems forever, all the lectures etc. Dry eyes for lots of years, noise in ears - years and years, temperature control went mad - 'it's your age' - not too sure about that.

Parotitus several times, luckily had a fantastic GP who gave me antibiotics within an hour of the swelling starting the first time, it still swelled up but probably shortened the suffering - or as the other GP cheerily said "I bet that hurts like Hell" - or as I thought "wipe that smile off your face young man or I let down the tyres on your nice BMW which is handily parked next to my car". I saw a max-fax specialist who pretty much told me to get a life when i told him I was worried about a re-occurance - my goodness I would like to meet him again - his BMW would get it for sure!!!

My palms and soles went mad, skin thickened and split like a knife was dragged across them. 6 months of light treatment helped a lot. Then a chance remark to a dermatologist started the ball rolling, I mentioned a pain in my big toe, he mentioned blood tests. It came back positive for Sjogren's so there was an investigation in case the light treatment had caused lupus - why on earth didn't they check first?

What I want to know is why, if my immune system is attacking me, am I suffering from a seriously bad cold/flu? Why doesn't my immune system take care of that? Any answers Julia?

One Woman's Journey - a journal being written from Woodhaven - her cottage in the woods. said...

I have just finished reading many of your past posts. Wish i had found you several years ago - but -better late then never.
Diagnosed with Sjogrens about 8 years ago but suspect it was there years before. Starting to see a rheumotolgist that is coming to my small town from the big city.
I have much of what you share and have been so discouraged. A lifetime of busyness and moved back to my home place and over the last year so much of what I have enjoyed doing I cannot do. Long story short is I realize that I now have to change much of what I have been doing.
Just so pleased I found you and
comforting to know that I am not the only one. Also pleased that at 78 this was not a problem in my 30, 40, 50 years.

Karin said...

Your story is very recognizable Julia. Thank you for sharing it. I have my story written on my own blog But it's in Dutch, because I live in the Netherlands.

deb thomas said...

I also have sjogrens as well as mixed connective tissue disease and crohns. You are right, getting the diagnosis doesn't change anything except at how you look at the disease. I started having symptoms in 2002 and my disease stayed fairly mild for the next 6 years. While I knew something wasn't right, I was still able to do what I wanted. My Rheumatologist automatically said it was psoriatic arthritis since I have psoriasis. She did little as far as treatment or testing. In 2008 my disease started progressing more rapidly and she finally started me on some med that brought some relief but not great relief. It wasn't until I moved in 2010, to another city. I started with a new Rheumy who really took the time to listen to me. After about 6 months of seeing me, he said he really didn't believe it was psoriatic related, it just didn't match up. He started the entire workup all over again for himself and within the last year of him witnessing the drastic change in severity with more frequent flares and seeing the symptoms I was officially diagnosed with primary sjogrens syndrome and mixed connective tissue disease. I was really starting to feel like I was going crazy with all the symptoms and sometimes having new ones at each visit. The more I heard, you don't look sick, just made me feel even crazier. I was in and out of the hospital numerous times. I never felt good and still don't, but it was a relief to finally get that diagnosis. Yes I still have the disease, but now I can properly arm myself with knowledge that will help prevent some symptoms, or at least help them not be as severe. Now I am not afraid to discuss them with my doctor, before I feared it would just make me sound as crazy as I was feeling. Thanks so much for sharing your story.

Unknown said...

Oh my gosh I was starting to write the novel that is my story but y'all don't want to read for that long. ;)

I've been choking on stuff since my mid twenties and I'm almost fifty. My eyes swelled way up and I had a high fever when I was about 32, ever since then my eyes have been dry and my left eye would get really inflamed. Details details lots of frustration, I only got a diagnosis of Sjogrens in particular from an environmental allergist 3 years ago, I then went to a rheumy and she gave me plaquenil which helps some. I have constant leukopenia, and all kinds of other junk that I've taken for granted for years and as I read your blog and the replies I think 'wow, that's part of this too?' constantly. My doc seems to think the pain is fibromyalgia and doesn't seem to link the pain with the sjogrens. I asked her if that was the case why does the plaquenil help it then?

Doctors. Ya gotta love them. And their really nice cars. ;)

Anonymous said...

I feel somewhat lucky...mine was caught fairly early and by total fluke. I have enjoyed napping since college. I just never seemed to get enough sleep! But otherwise I was fine until I was pregnant with my second parotid glands swelled up and I looked deformed, and my hands and wrists ached. My obgyn didn't have an explanation so we chalked it up to swelling from the pregnancy. The next year, I was pregnant again but miscarried., I saw a hematologist because my pcp thought my iron levels looked high. When I showed up, it was a new doctor to the practice and he didn't realize from my chart that I had miscarried, he was surprised to see that I wasn't 9 months pregnant! A doctor I had never met started questioning my history of 3 miscarriages, and asked if I had mouth sores or joint pain, etc....yes, yes, yes...WHY?!? Then it all started to come together. I have a strong AI link in my family but I'm so young, I had never thought about it. He ordered an ANA and it was positive. To make a long story short, I ended up in a rheumatology office and am learning as I go...we know I have Sjogrens. The verdict is still out on other conditions. What's causing me to have ridiculous hot flashes? And, wait, is that a butterfly rash on my face?!? Hmmmm.