day 12: sleepathon!

Day 12 turned out to be "recover from day 11 day."

Whenever I see people running 5ks or marathons for lupus I think wow- the only way most lupus patients could participate would be if they changed it to a sleepathon. I'd have been a serious contender today.

Of course I do believe it's possible to get well enough to run a marathon (if I wanted to), but I am not there yet- that's for sure!  But I'm working on it. And some days working on getting healthy means doing less.

I had a strange episode when I was 17 where for 3 days I kept falling asleep. On the couch, even behind the wheel. I was getting a normal night's rest, but I just kept falling asleep. After 3 days, it passed, and it never happened again. I will never know what that was about, but that is how I felt today.

My sophomore year of college, I was constantly falling asleep as well. On the couch in one of the classrooms (I think I slept through someone's entire music theory class on that couch), in the hallway with my books under my head. Sometime during my 2nd semester, my piano teacher asked me "We've been wondering- are you on drugs?" What?! We?!? The whole faculty is sitting around gossiping about me? I was, I'm sure, visibly shocked and offended, and assured him that was not the case. So then he suggested I get some multivitamins.

I had my wisdom teeth extracted right before that fall semester I don't think I've ever recovered from it. I've never been quite the same since. So once I'm feeling stronger, I'm going to look into possibly getting those pockets looked into and maybe filled in (where my wisdom used be). But no oral surgery right now. Right now, building health.

carla

http://www.thesingingpatient.com
http://www.facebook.com/carla

I'm here all week. Try the mints.

Fatigue. That is one of the most frustrating parts of lupus. To the observer, it can easily be confused with depression or laziness. To the patient, it feels like a crushing lead weight.

What to do? Well, you can go on prednisone. Well all know that story. You can deplete your adrenal glands by sucking down a bunch of caffeine (which still may not work).

What has helped me in the last few years has been eating cooked kale (i know, sounds nuts) and doing chi gung (simple movement and deep breathing; makes sense- getting more oxygen to the cells. Chi Gung is a lot like tai chi, but easier to learn. Make sure you do "healing chi gung," not "warrior chi gung").

And today I've got another idea for you, that I have not yet tested.

A doctor created a product called "joint mints" that seems to help people with joint pain and fatigue. I have no idea what's in it, but it's supposed to be natural. All you need to do to get 2 free boxes is take a couple quick surveys. You also have to have been diagnosed with lupus by a doctor and be over 18. The offer is limited to 100 people, but I just took the survey today, so it's still going on. Here's the original e mail he sent me.

Hi Carla;

I’m writing to offer you a couple free bottles of a (natural/herbal) anti-inflammation product I’ve developed. The only ‘catch’ (there’s always a catch, right?) is that I’d like your feedback – via a series of short surveys. (So it’s a pretty modest catch.)

The product, “Joint Mints” (www.JointMints.com) is obviously intended for joint pain – mainly osteoarthritis – and it works quite well for that. But among the hundreds who’ve provided feedback there have been a few (six) with lupus, and eachreported substantially less joint pain and less fatigue within 21 days of starting Joint Mints.

I didn’t expect the product would help in lupus, but I’m encouraged by what I’ve seen. So to collect more information I’ve set up a dedicated ‘sample-survey’ program and I’m inviting your participation.

If you’re interested, please visit the product page and then this link to learn more about the survey-sample offer http://www.surveymonkey.com/s/5NQ5XYR

Of course I’ll be happy to answer any questions.

Thanks and best wishes, Doctor Steve

Stephen C. Roberts, MD
Chief Executive

So, if this fits you, click away and get some mints. Unless you're like my husband and you hate mints. In which case... never mind.

I just took the survey and look forward to giving them a try. I don't currently have joint pain but I do have muscle pain. And I like mints. It's a good thing they are lozenges, because if they were junior mints, I'd eat them all in one sitting. (Which is why I don't buy junior mints at the store). I'm rambling now.

I'm here all week. Try the mints.

Cheers!
Carla

Lupus and sleep

Question:
Does lupus cause extreme need for sleep?

{This was so succinct I did not know whether they were asking on their own behalf and they were just too tired to type anything further... or whether they had a friend or relative show sleeps a lot and they were either concerned or suspicious. So I answered it assuming they were asking on their own behalf.}.
 
Hello-

Thanks for your question.
Yes lupus causes fatigue, sometimes extreme fatigue, and definitely requires that you get plenty of sleep, more sleep than you normally would, especially when the lupus is "flared up" (really active).

If you can get the lupus under control, you may not need quite the large amounts of sleep you do when you're flared up. But it is very important to get as much sleep as you need when you have lupus.


Allow me to also point out there is a trap of sleeping to avoid things, because you're depressed. Only you can really know when you've crossed the line between taking care of yourself and avoiding life.


(Thoughts on sleep, anyone? Comment below!)

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com - performance  info and dates

www.youtube.com/user/carlaulbrich - funny songs

www.linkedin.com/in/carlaulbrich

www.twitter.com/singingpatient

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get Carla's book! http://tinyurl.com/348hroc

The Spoon Theory

One of the many frustrating things about having lupus, or any chronic illness, is trying to communicate to others what you're going through. When the disease is active, we often look better than we feel (thank heavens! it's one thing to look like crap, but who wants to also look like crap?), and some days we actually feel better than others. But the fact is, if you're struggling with an active chronic illness, life is different after diagnosis, and it can be hard to clearly explain your situation to "earth people."

If any of you have not seen or read or heard The Spoon Theory, you're in for a treat. This is blogger/ sepaker/ patient advocate Christine Miserandino's account of finally being able to explain to her best friend what it was like to manage very limited energy. The spoon theory is widely popular among those with chronic illness, because it seems to finally put into words what all of us at some point have struggled to communicate. Here it is being read by Christine herself:




I couldn't agree more with this: it can be a gift to have something in your life that forces your to live more deliberately. Thanks to Christine for this great explanation- a leap forward in communicating from both sides with empathy, compassion, and greater understanding.


Carla Ulbrich, The Singing Patient and Health Coach

http://tinyurl.com/348hroc - Carla's book

www.singingpatientwellness.com - health coaching- visit this site to get a free e book on nutrition! 

www.thesingingpatient.com tour dates, videos, CDs, books

www.youtube.com/user/carlaulbrich- funny medical songs