Monday, February 24, 2014

Posting questions in health forums, sorting through answers

There are a number of health forums (kinda like what we once called "chat rooms") on the internet now, where you can post a question and others (usually patients) chime in with what has worked/ not worked for them. There are forums for almost any specific disease you can think of, and often more than one.

When you post a question to such a forum, you're going to get a lot of answers, and you can be almost 100% certain they will conflict (at least in the lupus forum people stay on topic. There's no one turning every conversation into "Obama this" "right-wingers that." Geez, lupus patients are fighting brain fog and they can stay on topic in a forum! Are you listening, Yahoo News trolls? Oh wait now I'm off-topic. Ironic).

Here's an example of what you might get.

This question came from a lupus online forum:

"I'm writing for advice on neuropathy treatments.
I have just tried 10 k lazer treatments for the neuropathy in my feet and it made zero difference.
I can't stand up longer than 10 mins at a time and am adjusting to walking with a cane now.
If anyone can share something that has helped please let me know."

It was met with several responses:

1) neurontin didn't help me but lyrica does, though i still get break-through pain.

2) I have a friend who had neuropathy and falling and was helped by Cymbalta

3) I was on neurontin but was struggling with bad headaches so my neurologist switched me to amitriptyline. I also have IVIG treatments, they seem to work for me.

Here's my response:

I actually was helped by neurontin. but we're all different. And it wasn't generic at the time. I imagine it is by now, as that was 2002 when I took it. My feet used to burn like mad and keep me up all night, every night. They would finally stop burning about 6am, then the ^&%$ leafblowers and lawnmowers would start up at 7am (living in South Florida at that time).

People who haven't been there can't quite grasp how torturous it can feel. Which is why I was so grateful that the neurontin worked- I could finally SLEEP! (Once the leafblowers left, anyway- I've since learned to appreciate a bedside white noise machine).

I did read the warnings on neurontin, and I knew it wasn't a long-term solution. I wanted to be drug-free, even though the drugs were helping. So i kept looking for solutions, and I was helped a great deal by 2 things: Chinese acupuncture and chelation therapy. I was doing several things at once so I can't say which helped most, but those were the 2 things (besides doctor appointments and trips to walgreens) that I did the most.

Nowadays, I stay healthy by avoiding the foods I'm allergic to, and getting enough rest and exercise.
I am now on zero lupus drugs. and have zero neuropathy since 2002

I found it very helpful to keep track of my symptoms and pain levels, and what treatments/ changes I was making in a journal. I could measure my progress, and tell which things help and which don't, because it sometimes takes a while for things to make a difference. Like acupuncture or diet change- it can take days or even a weeks before you notice a shift.

You can create a journal with something as simple as a spiral notebook, a Word document, an app like Symple, or this customizable "Symptom Tracker" that I created (it's free):


Ultimately, it's you who lives with any decision about your health care. So, the way I handle sorting through responses I get from forums is this: whatever pops out to me amongst the responses as feeling like a good thing to try, I give it a fair shot. I try stuff. Keep what works, toss what doesn't. And I keep track of my symptoms and what changes I am making, so I can connect the changes with the results.

My best wishes for great health for each and every one of you-


Carla Ulbrich

The Singing Patient

Humor, song and hope for people  who need it most- patients and healthcare workers

Thursday, February 13, 2014

Sisyphus VI: Pax Be With You

Sisyphus VI opens with a friendly sparring session with Orion. Sisyphus is in good form and enjoys the session.

Shortly after, a match is set up with Pax, who has been crushing everyone in her path.

Sisyphus' first strategy was to rope-a-dope Pax. Estimating that Pax was only going to have a 4-8 inch reach, Sisyphus went out at 2:45am to shovel away the first 2 inches (only took about 6 minutes), then went to bed. She thought she had outsmarted Pax, only, upon awaking, to be greeted with a foot of wet, heavy snow. She clearly underestimated her opponent.

Picnic, anyone? (From the set of Sisyphus VI)

Putting on her gear, her husband shouts,"Don't do it! You are NOT shoveling this!" "I'm just going to assess the situation," Sisyphus said. As she shut the kitchen door, she grabbed her shovel. Never tell Sisyphus NOT to do something.

Here, the plot becomes kind of a "Rocky VI meets Pay it Forward." Someone (we don't know who) had shoveled the end of her driveway- the part that would normally be impassable by car without shoveling first. So she, in turn, shovels her and her neighbor's shared walkway, which she had planned to skip this time.

As she shovels the center of the driveway, she realizes she's running out of places to put the snow. The pile in the yard is as tall as she is. If she just dumps it into the street, the plow will pile it at the end of the driveway when it comes through. But there's nowhere else to put it.

The shoveling scene is as long as the one in Maximus- a full hour. And you hear her inner monologue, as she's wondering whether she still had the eye of the tiger. The fun has left the fight. Maybe the season has been too long. Maybe there have been too many fights too close together. Maybe it's time to retire... A moment of contemplation, as she stands there holding the shovel upright, thinking about quitting mid-fight. But then a voice inside says "Never give up. I may rest for a moment, but I will not be defeated! I will not quit!" And although she may not feel like she has the eye of the tiger, she goes the distance. She finishes the fight. And knowing that, she can hold her head high.

The match ends in a tie.

Back in the locker room, Sisyphus hears that Pax wants a rematch. Immediately. As in 12 hours later. Are we really not taking ANY time between sequels now? Geez, talk about milking a franchise.

Sisyphus has new strategies lined up already: You know how they say "When God closes a door, another one opens? Or maybe He closes a door and opens a window? Well, now that my yard is 'closed' for snow dumping, I'll open a manhole cover and dump it down there." Well, that's creative. Wonder if it's legal. And also, next time she plans to wear an ipod, playing- you guessed it- Eye of the Tiger. Already cued up. This might be worth watching. I almost hope Pax shows for the rematch.

What did we learn? I guess you can climb a mountain or fight the fight and succeed, as long as you persist, even if you don't feel like a champion single every moment.

Did any of you see Sisyphus VI, or anything starring Pax?
What did you get out of it?

Carla Ulbrich

The Singing Patient

Humor, song and hope for people who need it most- patients and healthcare workers

Thursday, February 6, 2014

Sisyphus V : Of Ice and Men (really young men)

Just 2 days after Sisyphus IV comes...

Sisyphus V : Of Ice and Men (really young men)

In my opinion, this was way too little time between sequels. And that’s even a plot point in the movie.

Usual setting (NJ suburbs).
The opponent in this episode is “Nika.” The snow isn’t as deep this time, but it’s heavy. Ice, then 3-4 inches of snow, then more ice.

In this sequel, we learn that Sisyphus is a part-time guitar teacher. Every Wednesday (and today is a Wednesday), she commutes to a guitar shop 40 minutes away. School has been called off, and the roads are a mess, so she cancels lessons. Again.

Now, what about clearing that driveway?

Sisyphus was warned by her trainer to be mindful of her strained back muscles (from the fight with Maximus 2 days ago), and not to go back into the ring too soon. Maybe even consider retiring. Open up a restaurant and go table to table telling stories of the glory days. There was a long dialog between her and her husband about this- if not retiring, then at least letting someone else step in this one time. The husband’s back is injured, her back is still recovering from fighting Maximus 2 days ago...

Sisyphus looks wistfully out the bedroom window at her neighbors fighting the icy mess- and winning. Ah, the thrill of the kill! Of just being out there in the middle of it all! And just then her back spasms, reminding her of her trainers’ warnings.

She goes downstairs and looks out the front window. Having built up some good shoveling karma with the next-door neighbor for shoveling the shared walkway the last 2 storms, it appears the neighbor has reciprocated.

Job already half-complete. And so, she relents and allows the husband to call Joan, a neighbor who had offered her grandson’s shoveling services, to finish the job.

That’s when I realized that “Child Labor in the Jersey Suburbs” was actually a Prequel to the entire Sisyphus series! In that movie, released Jan. 3, 2014, the actress now named Sisyphus was just a bit part, one of numerous neighbors in a New Jersey suburban condo complex to hire a neighbor’s 10-year-old grandson to shovel their walks and driveways. Upon seeing the child’s age when he rang the bell to get paid, the woman later known to be Sisyphus felt so guilty about this poor scrawny young kid being pimped out by his grandmother to shovel practically the entire neighborhood, she vowed to take care of her drive and walkway herself from then on.

But having the job already half-complete, and knowing that this time, the kid (we still don’t have a name- he’s just called “Joan’s grandson”) is showing up with a friend to help, Sisyphus relents. She had already convinced herself the job wasn't as big this time.

I’m imagining the convo in the writers’ room,where they’re deciding whether to focus on Sisyphus or the 2 young boys shoveling snow. “Sisyphus V or Child Labor in the NJ Suburbs II? Sisyphus franchise has momentum, and we can’t have a lead role who’s named “Joan’s Grandson”- let’s go with Sisyphus V.”

The movie ends with Sisyphus sitting on the couch, having just completed physical therapy routine, with an ice pack on her ankle and a heating pad on her back, watching the Weather Channel. They are forecasting another storm for this weekend, and possibly one a few days after that. Maybe I read her face wrong, but I’m pretty sure she secretly hopes to be up for the fight. They are most definitely telegraphing yet another sequel here- or even two. At least for now, Sisyphus fans just can’t seem to get enough of this.

I guess this was a story about dealing with ones’ own mortality. Or knowing when to accept help. Admitting you’re not invincible? Like all movies, if the story is told well enough, everyone takes something a little different away from it.

{If you've read down to here and you're thinking "what the bleep is this about? Has she lost her mind?"- it's my fake movie review of my real life experience of dealing with the relentless snowstorms this winter in New Jersey. With some Rocky references. The previous "review" had Star Wars references. An exercise in maintaining Humor. Imagining my conundrums as if they were an indie film- or even a blockbuster series of films. It's how I keep my sanity. The time just flies when I'm shoveling! Or in this case, sitting at my desk answering emails. Try it- if you're doing something you hate, turn it into your favorite actor or movie being played out}.

Stay warm and walk like a penguin (that's how you keep from slipping on ice).
See you after the next sequel- coming soon!


Carla Ulbrich

The Singing Patient

Humor, song and hope for people  who need it most- patients and healthcare workers

Monday, February 3, 2014

Sisyphus IV: Shovelus Maximus

Well you all know I’m a fan of the Sisyphus series ("movies" of the “snow” genre).

For anyone who isn't hip to this great franchise, the main character, a 40-ish married woman (played by the inimitable Carla Ulbrich), is based on the Greek mythological figure Sisyphus ( who was punished for chronic deceitfulness by being compelled to roll an immense boulder up a hill, only to watch it roll back down, and to repeat this action forever. Only in this case, it's shoveling snow in a New Jersey suburb.

So far there have been 4 movies:

Sisyphus: One woman. One shovel. one big ol' pile of snow
(this one ended in a cliffhanger- she hasn’t worked out in a couple months- will she really go out and shovel another 6-8 inches later?)

Sisyphus 2: There’s more (a continuation of part 1)

Sisyphus 3: This Time It’s Personal  (favorite quote from Sisyphus 3(After the snowplow dumps the snow she just shoveled right back into her driveway.): “maybe you can’t step in the same stream twice, but you CAN shovel the same snow twice.”)

And today brought the release of Sisyphus 4: Shovelus Maximus.

This episode of the Sysiphus series had a totally different opening. At first, I wondered if i was watching the right movie.

In the first scene, we see throngs of fans heading to superbowl.
It’s 50 degrees out on Feb. 2, in New Jersey. Kinda hard to believe, but, hey suspend disbelief. It’s the movies.

Setting is Secaucus station (huge station very close to the “MetLife” stadum).
It’s so jam-packed it’s 100 degrees in the train station. People are passing out from the heat. Security just gives up on checking people’s bags, but it still takes 2 hours for anyone to get to the game from there. People on the train are chanting “Jersey sucks! Jersey sucks!” That’s when I knew i was in the right theater.

Cut to Monday (the next day). Sysiphus had a long busy weekend (not at the superbowl). She wakes wakes up early and sees snow, then rolls over and says to herself “i’ll take care of it later. There’s only 1-3 inches predicted.” Hours later, she wakes up and to drooping trees and 8 inches on snow on the ground.

My favorite line from this episode:
 “someone somewhere made a bet that prediction was accurate and lost big time.”

After a quick protein shake and some vitamins, she puts on a ski suit over her tshirt and sweats, plus a hat, scarf, and battery-operated heated gloves. However, unlike all previous Sysiphus movies, it’s relatively warm out- 30 degrees and no wind. She is totally overdressed and sweating like a pig.
Hearing her grunting at the heavy wet snow, an Indian neighbor walking by offers to help. Sysiphus declines out of pride, and because she has no 2nd shovel. That would mean not accepting help, but just letting someone else do it. She jsut smiles and says “No thanks -I’m almost done.” (She's not).

Meanwhile her husband (in a way, the real Sisyphus- perhaps a reveal in a later sequel?), pounds away inside the condo on his laptop and phone for his corporate job, feeling like a schmuck because his wife is shoveling snow while he sits inside. he doesn’t believe her when he says she actually enjoys shoveling snow (even though she used to enjoy cutting grass, before moving into a condo). he feels cheap for not hiring someone. she secretly enjoys the workout and sense of accomplishment. but if she had to shovel a 2nd driveway? no.

Also different this time, the snowplow, usually a foil, is working FOR her. that’s new. It’s coming around the circle the opposite direction from usual, taking the snow away from her driveway and dumping it in front of the yard/ further down the street. so not *everything* is working against our protagonist this time.

This time, a couple neighbors walk by, griping about the condo association. Why do we pay $300 a month and have to shovel our own snow- AND pay to use the pool? Good question, but that scene goes nowhere. Except maybe to show that Sisyphus doesn't get riled up by it.

For the first time in the series, the snow is heavy and wet, so the movie is reallllllly long. there’s an entire hour of just shoveling and interior dialog, broken up only by the snowplow or a neighbor walking by.

I have to ask though: why, EVERY SINGLE TIME, does she clear the walkway and driveway, then look surprised that she has to clear the car and then the driveway again? It happens every time- why is she still surprised? Though amusing, I find this part a little far-fetched.

I kinda wonder why they keep making movie after movie with the same plot, but i guess it’s better than going back and getting Sysiphus’ backstory, with a child actor and way too many CGI and special effects that not only are the dialogue and directing neglected, they seem to be forgotten about completely.

But who am I to criticize? I keep attending the sequels. I have been and will attend every sequel, even if it snows.

The movie ends with Sysiphus watching the news, and the husband bringing her a glass of water (no ice). There’s footage of Superbowl fans stuck in the Newark airport, about 30 minutes from her house.

Given the opening and closing scenes, I guess what we’re supposed to learn from this is human suffering is universal. Struggle is part of life. People stuck in a massively overcrowded train station, or an airport full of canceled flights, or someone shoveling snow off the same driveway for the 4th time in 3 weeks.

But I’m not sure she learned the lesson, as her last line is her yelling at the TV “Hey, at least you eventually get to leave!”

Rumors are swirling about a sequel being made *this weekend* (already?! Guess they’re striking while the shovel’s icy cold!) with 4 FEET of snow. I’m skeptical, but if it happens, I’ll be first in line to enjoy the show.

Asked if she would be up for another sequel so soon, the lead actress did her best Sylvester Stallone impression: “Absolutely.”
(Yes, this is what I think about when I’m shoveling- "what it would look like on the big screen?" It keeps me amused and enjoying the task past the point of where I would have naturally enjoyed it, which is for about 10 minutes).


Carla Ulbrich

The Singing Patient

Humor, song and hope for people  who need it most- patients and healthcare workers