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!

Insurance

I was glad when ACA (aka Obamacare) passed. This country has long needed to do something about medical care for people who can't afford to buy traditional insurance coverage. But I never expected to need it!

I have been in the full time workforce for nearly 20 years, with a short break in middle to finish school. For the last 15 years, I have never been unemployed or uninsured. It's scary, but the prospect of managing Sjogren's without the insurance safety net is daunting.

My Cobra policy - where I pay full price to continue my employer's coverage - would cost in excess of $500. $200 per month is still a scary number, but it's more on par with what I pay to insure my car. In other words, it seems reasonable. There were some policies that cost less, but the list of doctors was "slim pickin's." None of my current doctors took the cheaper insurance.

The deductibles are high - any hospitalization is likely to bankrupt me, but at least I would be able to afford to keep my disease under control. And hopefully, this is only temporary until I get back to work.

For what it's worth, I can't imagine why our conservative leadership seems so determined to keep this out of the hands of the Average Joe. It feels an awful lot like elitism - as if people without access to insurance through their employers somehow don't deserve to have insurance at all.

GI Problems, and the Grossness of Medical Problems

For a really long time, I've had GI problems. A nervous stomach. A spastic colon. Whatever you want to call it, it boils down to this: whenever something important or stressful is happening, that's when I will get pulled into the bathroom with cramps and ... I would say "you know," but unfortunately, there are two types of "you know." Or three, depending on how you look at it. I get the diarrhea kind.

Over the years, it's gotten worse. In the past couple of years, it's been a daily occurrence, the scale of importance being "must be at work on time today." Needless to say, it's caused serious friction at work. The more pressure I get from work the worse it gets, so it's become a self-defeating problem. My boss complains about how much work I miss, and it causes me to miss even more.

Between the beta blocker I take for migraine headaches - which has the benefit of easing inhibitions - and the anti-anxiety medication, my problem with stress has eased somewhat. But my stomach problems continue to be an issue during the week.

After taking six weeks off work due to extreme fatigue, I finally convinced my Rheumatologist to find me some better drugs. She put me on a low dose of steroids for immediate relief and we set out to try a couple of particularly nasty-sounding drugs for the long term. The steroids really did have an immediate effect. The lower back pain that has been my constant companion for several years - and an intermittent one since my mid-teens - was gone. Note: "gone" is a relative term. It really just means it reverted back to its intermittent state. In any case, within a couple of days, I had an energy level I hadn't felt for 3 or 4 years, so I was finally able to go back to work.

Within a few days, I realized I also had not had the stomach problems from before. Well...okay, I still had them, but not every day and not usually as bad. I realized the back pain was another big piece of the GI puzzle. When my back muscles cramp, it messes with my intestines. Unfortunately, the steroids are just temporary and they lose some effectiveness after a few weeks. So now my back hurts again and the stomach cramps have returned, albeit to a lesser degree.

So now what? I can't live with this forever. I've had a couple of doctors diagnose Irritable Bowel Syndrome. Of course, all the medications that help with that are for people with constipation. It was starting to look hopeless that anything would ever help. But then...

My husband, in the meantime, has developed a few health problems of his own. They are different and unrelated to my health problems for the most part. One of the problems is that he has developed a chronic dry cough. He's had the cough for years, although it eased up considerably when his doctor began an aggressive asthma regimen for him. But it didn't stop, and after having a procedure done for another issue, his doctor sent him to a gastroenterologist for an "upper GI" or an endoscopy.

I had one of those done a while back to confirm a diagnosis of acid reflux and it sounded like that was going to be the case here as well. And it was, but wait...there's more! The doc took some tissue samples and determined he had an infection of helicobacter pylori (h. pylori), the bacteria that causes stomach ulcers.

Hubby has major curiosity about his medical issues. He's not content with the information his doctors give him. He wants me - the librarian - to look these things up at home. So we did, and what we discovered is that the most common symptoms listed for h. pylori and gastric ulcers sounded very familiar:

The most common symptom of peptic ulcer disease is gnawing or burning abdominal pain, usually in the area just beneath the ribs. This pain typically gets worse when your stomach is empty and improves when you eat food, drink milk, or take an antacid. (from WebMD, emphasis is mine)

WebMD also says burping and bloating are common. I NEVER used to burp. Now, I do it frequently and it's horribly embarrassing.

The two most common causes of peptic ulcers are h. pylori infection and overuse of anti-inflammatory medications like aspirin or Advil. Because of my back pain, I have used anti-inflammatory medications almost constantly for at least 10 years.

My appointment with the GI is next week, and I assume he will want to do an endoscopy. I hope he finds the same h. pylori because all it takes (usually) is a good dose of antibiotics and some acid reducer medication to clear it up. I'm totally crossing my fingers!

You see, morning is almost always when I experience my stomach problems. My stomach is empty in the morning, and I used to mistake the pain for hunger. Gnawing is exactly the right word to describe it. Moreover, I sometimes get a "fizzy" sensation immediately after eating.

Update 1/23/15

The GI doc determined h. pylori was not my issue, so it's probably mostly  muscle spasms in my lower back. I feel better when I'm not having to walk too far.

Drool!

This morning, I woke up with drool crusted on the corner of my mouth. Gross? Yep. But that hasn't happened to me in over 10 years. I hope it's a sign that the new meds are working!

The joy of forgetfulness

One of the curses of Sjogrens is the memory problems. When I was in my late teens, my (now ex-) husband would get mad at me because we would hop in the car to go somewhere, and then I couldn't remember where we were going. We were very mature back then. :/ Even now, I sometimes miss my turn or exit because of that.

However, this inability to remember can be a blessing too. The bullies in elementary school? I don't remember who specifically they were. It was pretty much everyone, but surely there was a ringleader, right? No idea... Also, I really do leave work at work and home at home. I mean, yeah, when work is extra stressful, I sometimes come home and vent, but once I move on, it's forgotten until I go back to work. I don't lie awake at night mulling problems anymore. I sleep well. The joy of forgetfulness, indeed.