Posts Tagged ‘sjogren’s’

I sound like Darth Vadar now…but it’s cool

November 3, 2017

One night early in January of this year, I woke up and went to the bathroom. When I got back to bed, my husband said, “What have you been doing?” I told him I’d just been to the bathroom. He said, “You’re breathing hard, like you just walked around the block!”

While I knew I’d been feeling fairly crappy, I hadn’t realized the extent of it until that moment. It had crept up so gradually that I was like the proverbial frog in the pot of water that gets hotter over time; adjusting to the discomfort until the boiling point is reached. I had attributed my lack of stamina to working a 12-hour night shift and being far too often sleep-deprived.

What that didn’t explain was my brain fog, occasional heart palpitations, and shortness of breath upon attempting even the most mild activity. At my annual exam in March, the GP listened to my symptoms, made some notes and said, “You know, you’ve gained 16 pounds in the last year.” I said, “No, I’ve actually gained 16 pounds in the last few months. It’s weird, because my eating habits haven’t changed.” He scheduled me for heart and lung tests, and when I returned with a clean bill of health in those areas, told me I should lose weight. That didn’t sound like it would help much, because I’d been even heavier a couple years earlier (before losing about 45 lbs) and had a lot more energy and felt a lot better even then.

Luckily I had also mentioned that my lower back had started to seize up occasionally, for no apparent reason, which prompted my GP to refer me to a rheumatologist. She turned out to be my hero! She listened to my symptoms, sent me for tests and determined I have Sjogren’s Syndrome, which is a disease in which your immune system attacks the glands that produce saliva and tears. The heart palpitations were caused by esophagitis (the esophagus was inflamed and pushing against my heart), which was caused by my throat being too dry to properly “lubricate” the food’s journey to my stomach.

The rheumatologist started medication for the Sjogren’s and got the esophagitis cleared up. With the medication, judicious use of eye drops, Xylitol lozenges and frequent hydration, I’m managing the disease pretty well.

But the shortness of breath and constant fatigue were still a thing, which the rheumatologist said could not be explained by Sjogren’s. Then she asked me what I thought was a strange question. “Do you snore?” I said, “Let me put it this way; my husband wears ear plugs.”

The next thing I knew, I was being sent for a sleep study. You literally go to sleep in a medical clinic, monitored by a technician who can see you on a camera, hear you over a microphone, and track your brain activity, heartbeat and movements via electrodes. This is what you look like after being, as I called it, “trussed up like a turkey” before going to sleep.

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The best part? Those 20-something electrodes are all attached with a gooey substance that is a real pain to wash out of your hair! Also, I got a rash from the adhesive on my face. But despite the weirdness of all the wires, being in a strange bed and knowing I was being closely watched, I did manage to fall into a restless sleep for a few hours.

Two days later, a nurse called me. “You have sleep apnea,” she said, and scheduled me for another sleep study a few days later. This time I was not only wired, but had to wear a mask attached to a CPAP (continuous positive airway pressure) machine. The technician explained that there are several stages of sleep. During “normal” sleep, your body is detoxifying and healing. During REM (dream) sleep, your brain is detoxifying and healing. When you have sleep apnea, you literally stop breathing, often multiple times per hour. Instead of resting and healing, your brain sends a surge of adrenalin to start you breathing again. This constant influx of adrenalin puts you in “flight or fight” mode and thus, your sleep is not restful or healing and as a result, you’re always tired and have difficulty concentrating.

Left untreated, sleep apnea can cause weight gain, diabetes, cognitive issues, coronary issues, stroke, even death! I said, “I had no idea this was so serious.” The technician said, “I don’t want to scare you with all this gloom and doom.” I said, “I’m not scared, because you guys are gonna fix this!”

A couple of weeks later, I had my own personal CPAP machine. You wear a mask covering your nose, through which high-pressure air blows through a hose, forcing your airway open so you keep breathing as you sleep. It does take some getting used to! At first, I was like…

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“This is not comfortable.”

But, as the tech who demonstrated the machine said, “It’s like getting used to wearing glasses. They may not be comfortable at first, but you get used to them, and if you can experience a benefit from the glasses, you’ll be more motivated to adjust.” I said, “Well, I’ve gotten used to glasses, a sonic toothbrush, a bidet, and a car with automatic headlights. I didn’t like any of those things at first, and now I love them. So I’m hopeful.”

So yesterday was Day 6 of the CPAP therapy, and I have noticed an amazing difference already! Earlier this year, I remember walking from my office to the office of my boss’s boss, which is probably about 100 steps. By the time I got there, I felt so exhausted that I rudely plopped down into a chair before he even offered it to me, and I was literally panting. He said, “Uh…did you run here?” It was embarrassing!

At work last night, I left the office, went to the bathroom, then to the break room, then into another building to get ice from the machine, back to the break room where I stood in front of the microwave for about a minute, then back to my office. As I sat down, I realized that, while I was breathing a little heavier than a person in great health would have, I felt fine and not like I’d just run a marathon! And unlike before, when I’d wake up every couple of hours, unable to get a decent sleep and then have to down energy drinks (or just give in and take a 2-hour nap), I’ve had no trouble at all staying awake and alert the past few days. It’s amazing!

So, yeah, the machine isn’t easy to get used to, but it’s going to be well worth it. I’ve learned to shift my thinking from “OMG, alien face-hugger!” to “Hey, awesome jet fighter pilot hero!” (It helps a little…)

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