Symptoms That Have Meanings

Sjogrens Syndrome has a laundry list of seemingly unrelated symptoms: the gritty eyes and constant need for water, the sniffles and coughs, the tummy disturbances, lotion, chapstick, eye drops, dandruff, not to mention the constant pain (for me, mostly in my lower back).

While my back pain is the most debilitating symptom, the most irritating symptom is the sniffles.

It started innocently enough...I had to stop buying Cokes to drink in class because I noticed it was causing a lot of throat clearing. Fast forward a couple years, and the throat clearing has gotten markedly worse. I would be sitting at my desk in a quiet office and suddenly I couldn't get the crud out of my throat. I would try to clear it for 5 or 10 minutes before success. Finally, my boss told me to try cinnamon breath spray. I guess she got tired of listening to me. I know I did! Thankfully, it worked.

Fast forward another year or so, and now I'm having problems with crud getting stuck in my sinuses. It's not even getting to my throat anymore. I'm also dealing with getting a tickle in my throat that makes me cough and gag. This happened one day when I was on a business trip in San Antonio. It was a beautiful day, so I took some time to visit the Spanish missions. I was listening to the park ranger tell me interesting stories about the school that used to be there when it started. I tried to be polite and just ignore it, but I'm guessing my face must have been turning an interesting shade of purple while I spouted a half-hearted cough every few seconds. Finally he stopped in mid-story, looked at me, and said "can I give you something?" Still trying to maintain my veneer of polite, I nodded, and he handed me a few menthol cough drops. I have never been so grateful for anything that tasted so awful! Life saver!

In the meantime, I'm still being in my car at the end of every day, and my eyes are exhausted and I'm having to do this snort thing to clear the gunk the sick in my sinuses. I finally went to my doctor, who prescribed Claritin. When that didn't help,  she sent me to an ENT, who prescribed Zyrtec and Mucinex. So helpful. I'm not that good at recognizing when something isn't working, so I kept doing this for years. I thought I might have a deviated septum, so I went back to the ENT. The scan only showed a polyp that apparently didn't affect anything. I haven't gotten anywhere with this doctor or the specialist. So I just live with it.

Fast forward a few more years. I've moved to another state and I have a new doctor. Maybe I can try again. The first attempt was a bust: Zyrtec and Mucinex. Sounds familiar. So I asked for an allergy test. The allergist determined I had no allergies at all, so my problems must be irritants. Try a saline sinus rinse and more Zyrtec.

The saline rinse was great. I couldn't believe all the crud I was flushing out of my nose. It did help, but it caused problems, too. I ended up with water behind my eardrums, so I dumped the sinus rinse. And everything else. No more allergy medication. No more Mucinex.

It was not too much later I realized my problem was not excess mucous in my sinuses, but that the post-nasal drip I'd had nearly 10 years was simply drying out before it "dripped." It was thick and sticky, sometimes fibrous in texture, and I had finally figured out why.

About this time, my doctor sent me for some lab work, and my sedimentation rate was elevated. The lab called me back for a Lupus test, which was negative. My doctor had the gall to laugh at me for asking questions, wondering if there was a clue in that test. This was the beginning of the end for that doctor.

Fast forward another year or so... I'm getting to know my new doctor, just dealing with the day to day stuff, when I watched an episode of the TV show Royal Pains. Dr Hank had a patient with a persistent set of symptoms that sounded a bit familiar. In the end, he diagnosed her with Sjogrens Syndrome, so I looked it up. There I was in black and white. Dry eyes, dry mouth, itchy dry skin, dry sinuses, joint pain, fatigue. Wait...fatigue? I hadn't even recognized it, but I had problems with it since my teen years, and it had been getting progressively worse.

I brought it to my doctor and braced myself for the laughter. It didn't happen. He thought I should be treated and sent me to a Rheumatologist, who sent me to a clinical study. The study only showed a partial positive (summer off the tests indicated SS, others didn't), but it was enough for the Rheumy to try treatment.

It seems like my symptoms are trying to outrun the treatment, but I can tell it's helping. If I hadn't asked for testing, I'm sure I would feel 10 times worse by now than I do.

My Very First Telltale Symptom

My very first recognizable symptom that something was going on was the burning face. It was also my first experience with people brushing off my symptoms. (Well...no, not really, but that other happened when I was 6 or 7 and was most likely misinterpreted as childhood imagination.)

The first time my face heated up and turned red was after a high school football game. It was an away game and it started just as we were loading the buses for home. I reported it to one of the parents, who felt my forehead and decided I was not running a fever.

The ride home was so uncomfortable. It must have been near the end of the season. I face was burning up and I wasn't generating any sweat to cool off. Finally, my friend suggested I open a window just a crack and let the wind help out. That lasted about a minute, until the others started complaining about the cold.

Thankfully, our bus trips were usually an hour or less, but the trip seemed interminable. It had subsided by the time I walked into my house, so my mom didn't get how bad it had been. Besides, it was over, so no biggie, right?

Except that it happened again and again over a span of 20 years. My own Rheumatologist doesn't even think it's a symptom, but it's a symptom of SOMETHING! It mostly stopped when I began taking Plaquinil. It still happens occasionally, but it's now limited to one side of my face.

The clear trigger? Excess fatigue.

Sleep and eat

Not having a job has been very enlightening. I know I should be getting up early every day and treating my job search like a job. But it's hard to give up being well-rested for a change, particularly since I assume this is just a temporary situation.

I've discovered that I need 10 hours of sleep every night. I don't know how that works with job and school, but you can't improve without understanding, right? I've been trying to adjust my sleep schedule, but I just can't shut down at 9 pm like I did in my teens and early twenties.

My brain kicks into high gear somewhere around 8 pm. Before that, distraction will not be ignored. Mornings are pretty much a complete wash. If I wake up before 10, it's still noon before anything substantial can happen.

One benefit to how my brain works these days is the unstructured days keep me out of my stash. If I have to sit at a desk and work on x, y, and z projects, work the desk, and teach a class, I get bored and then I start imagining my stomach grumbling. Here at home, I wake up and nibble on something so I can take my meds. I'm not tied to the clock, looking for lunch at a particular time. Some days, I don't bother. Other days, I want to EAT ALL THE THINGS! Just knowing I can take a break and watch TV or read a while - maybe stop and do the dishes - keeps me from being tempted to snack all day long. I only eat when I'm hungry. It's not a conscious decision. It just works out that way.

I feel a little lighter these days, but I can't decide if it's food, winter dehydration, or just feeling my freedom. Either way, I do feel better. That's worth celebrating!