In Defense of WebMD

colonoscopy humorWhenever I tell Dan I’ve been reading health-related stuff on the internet, he rolls his eyes at me. I get it; I hate internet quackery and pseudoscience as much as the next person. And I think self-diagnosis via WebMD is absurd.

But I will say this: when you’ve been abso-fucking-lutely miserable for well over a year, it’s only natural to go searching for answers online. I haven’t been relying on WebMD and Isabel Symptom Checker alone though. As you know, I’ve been to lots of doctors and had lots of tests done—some of them twice!

I’m not saying I’ve figured anything out yet; I’m just saying…

There is value to this online research beyond the ability to commiserate with peers. I’ve been reminded that some of the things I considered personal flaws could actually be symptoms. Like hair loss, for example. My hair has always been pretty fine and wispy, but it’s falling out at increasingly alarming rates these days. That can be a sign of malabsorption.

“I think I have celiac disease,” I announced to Dan sort of seriously.

“Okay,” he laughed.

“I’m for real,” I said. “I was reading some stuff, and these people were describing my poop in perfect detail. You’ve seen all the hair I’m losing. I live on anti-diarrhea meds these days.” (Actually, “live” might be overselling. I tend to hover in the slightly less cheery state of being I refer to as “microwaved death.”)

“Maybe,” he shrugged.

I asked my primary doctor to draw blood and test for celiac disease several weeks ago. She did, and the test came back negative. But negative blood tests are possible with celiac disease.

My gastroenterologist consulation is next month. At this point I’d love to find out I have celiac disease. That sounds so horrible to say out loud. But it’s fixable. Every other autoimmune thing on the table has no solution. I want a solution.

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My Experience with Diclofenac for Fibromyalgia

FIBROMYALGIAAfter the EMG, I broke down and contacted my primary doctor’s office for something for my pain. In my communication I noted that I wanted an as-needed prescription. (My biggest fear was that they were going to try and put me on something insane like Lyrica. It’s pretty highly prescribed for fibromyalgia, like Cymbalta, and we all know how adamant I am about never, ever touching Cymbalta again.) 

She sent a prescription for diclofenac to my pharmacist. It’s an NSAID, but only available by prescription. I’ve taken it twice, and IT IS HELPING.

After the first pill, I went from about an 8 to a 7.5 on the pain scale. After the second pill, which helped me get a good night’s sleep, I’m at about a 4.5. For people who spend a typical day at 0 on the pain scale, that might not sound great. But for me? I haven’t felt this good in about a year. 

Also, I’ve gained fuller range of motion in my neck, shoulders, and upper arms. 

I’d write more about all of this, but I have no idea how long it will last. I’m going to celebrate by vacuuming my house.

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Electromyograms Y’all

chronic pain EMGToday was my EMG. I’ll get right to the good stuff and let you know that, as predicted by the neurologist a few months back, it was completely worthless. Okay, those might be my words. I distinctly remember him saying to me, “We can do an EMG, but it could be painful and I am 99.9% positive it won’t show anything.”

I didn’t originally schedule the test because 1) I am in so much medical debt right now, and 2) fuck more pain. Still, my primary doctor seemed to want that test checked off the list last time I complained about my predicament. So this morning I played the good little patient and let them shock me and stick needles in my muscles for no goddamn reason.

I’m not frustrated with either my primary physician or the neurologist, if that’s how I’m coming off. I truly believe they’re doing the best they can with what they’ve got (unlike the rheumatologist from hell). I’m really just frustrated with my situation. With the 15 months of tests and labs that tell me as much about what’s going on with my body as the fortune cookies at China Wok.

I realize that I might one day be forced to accept the diagnosis of fibromyalgia, but I’m not there yet. Still so much to rule out. And most of those things have no straightforward path to diagnosis.

My EMG Experience  

For anyone wondering what it’s like to sit through an EMG, here’s how my morning played out. 

The test is basically conducted in two stages. First you get shocked with this wand thing by some kind of medical technician; then the doctor comes in and sticks needles in your muscles.

I was initially convinced that the needles would be the worst part of the test, but I was wrong. Couldn’t even feel those fuckers! The shocks were disconcerting at best and painful at worst. It depended on how high she cranked the juice. Right arm and hand, right leg and foot. It took a while to get through all of that, and then she went to get the doctor for the needle part of the test.

I wasn’t impressed with the doctor who did the testing (she was not the neurologist I originally saw, for the record). She walked in the room and ignored my “hello.” She continued talking with the tech like I wasn’t even there, “I know, but there’s no way. It’s just a false positive.”

“I know, but I tried until I turned blue.”

Perhaps I should’ve pressed what that was all about, but I really didn’t give a shit. She put needles in three different leg muscles and told me to move this way or that way with my leg after each placement. “Looks good. I don’t even need to do the arms. You’re fine.”

Sitting here now, I’m thinking to myself. Am I paying for you to do the fucking arm? Then do the fucking arm! But in the moment I was just as happy to put my shoes and socks back on and go outside. Today’s weather was gorgeous.

Eight Hours Later

Going to doctors’ offices and hospitals is stressful, so sitting here this evening I’ve got an insane headache and I’m physically exhausted. I feel some residual effects of the shocks in my right hand. It’s tingly, like my nerves are recalling the trauma from early in the day. That jibes. What’s odd is that I also feel it in my left hand, which was not tested.

But as I’ve been saying for some months now, my nerves are freaking whacked out, yo! Every last one of them sends frivolous pain signals to my brain, so why not a little tingling too?

That’s it for now. Until next time.

 

 

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Need Help: Please Send Yoga Pants and Tapioca Pudding

yoga pantsIf nothing else, I’m in a better mood than the last time I posted. But that doesn’t necessarily mean that my physical condition has improved. I’m still suffering The Symptom That Shall Not Be Named, fighting off dehydration, and spending way too much time thinking about my predicament. Is this fibromyalgia? I don’t bloody think so.

Friday night, we made tapioca pudding from scratch. Well, let me be honest. I soaked the tapioca the night before and measured ingredients; Dan did all the hard work beating the egg whites and standing over the pot and stirring.

My tummy was so upset that I decided I would try the pudding warm. Ahhhh. It quieted the raging stomach and kept my heartburn at bay. I’m confident that in the 24 hours that followed, I ate 7 of the 8 servings the recipe made. Not exactly a doctor-recommended cure for a total digestive tract meltdown, but I do what I must to get by.

Interesting side note: I never had tapioca pudding until I was in my thirties. It doesn’t look like something I’d traditionally go for, but it’s very comforting.  Here’s the recipe we made, straight from the package of Reese small pearl tapioca:

Tapioca Pudding
Serves 8
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140 calories
25 g
53 g
3 g
4 g
1 g
111 g
128 g
17 g
0 g
1 g
Nutrition Facts
Serving Size
111g
Servings
8
Amount Per Serving
Calories 140
Calories from Fat 24
% Daily Value *
Total Fat 3g
4%
Saturated Fat 1g
7%
Trans Fat 0g
Polyunsaturated Fat 0g
Monounsaturated Fat 1g
Cholesterol 53mg
18%
Sodium 128mg
5%
Total Carbohydrates 25g
8%
Dietary Fiber 0g
0%
Sugars 17g
Protein 4g
Vitamin A
4%
Vitamin C
0%
Calcium
10%
Iron
2%
* Percent Daily Values are based on a 2,000 calorie diet. Your Daily Values may be higher or lower depending on your calorie needs.
Ingredients
  1. 1/2 Cup Reese Tapioca
  2. 2 1/2 cups milk
  3. 1/4 tsp. salt
  4. 1/2 cup sugar
  5. 2 eggs seperated
  6. 1 tsp vanilla
Instructions
  1. In a bowl, soak tapioca in 2 cups of room temperature water overnight. Drain water.
  2. In double boiler, heat milk just until no longer cold. Add salt and tapioca. Continue heating until small bubbles appear at sides of pan. Cover, turn heat to very low, and cook for one hour. Make sure that the milk mixture does not simmer or boil.
  3. Separate egg whites from yolks. Beat egg yolks and sugar together until light yellow in color. Add a little of the hot mixture to the egg yolks and blend thoroughly. Then add the egg yolk mixture to the tapioca mixture and cook on medium heat until very thick, about 15 minutes.
  4. Beat egg whites until stiff. Slowly fold the egg whites into the hot tapioca mixture. Stir in vanilla. Serve warm or chilled.
beta
calories
140
fat
3g
protein
4g
carbs
25g
more
variable http://blog.emilysuess.com/

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OMG I am So Gross

fatigue quoteAfter wrapping up today’s work and closing my laptop, I sat down in the kitchen to hang out with Dan while he finished making dinner (roasted chicken, snap peas, and mashed potatoes). Exhausted, despite having hardly moved today, I rested my right elbow on the counter and my head in my right hand and  glanced down at my shirt. I brushed a piece of lint away with my left hand and really noticed the shirt for a moment.

Huh, I thought I wore this shirt on Saturday. I did wear this shirt on Saturday. Yeah, that’s right…I wore it to Boomer’s obedience class. Wait, what day is it? Dear God. I’ve been wearing this shirt for—whips out fingers and counts—four days.

That’s sad, even by my current standards. Even sadder? This ponytail. On the upside, no one would ever tell me “but you don’t look sick!” today. 

Ha!

It’s been a rough four days and even rougher three sleepless nights. In addition to the usual pain and muscle weakness, I’ve been going several rounds with my digestive system. I have perpetual, intense heartburn that makes me cough and wince in pain. Of course, my generalized muscle weakness means my coughs are pathetic and useless. (On the flip side, I get hiccups that are so violent I’m surprised I haven’t cracked a rib.) I find some relief when I take the OTC pill recommend by my doctor, but it wreaks havoc on the rest of my gut, which is already very, very touchy. Everything that helps one thing fucks up something else.

And as I suffer, it’s hard not to focus on how far away my next doctor’s appointments are. One week until my EMG. Four weeks until I see the new rheumatologist. Six weeks until my initial consult with a gastroenterologist. Not that I have any real hope that any of these appointments will result in, you know, answers or anything. 

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