Having a Life When You Have an Illness

It's funny, being in "show biz," how most of us who have a chronic illness are secretive about it (I was for years) and are in fact, usually more reliable than artists who don't have an illness.

Back in 2002, I got up and did a show after I'd just had a stroke. My left hand wasn't working. I just sucked it up, told some stories and jokes and thudded along on the guitar with the few notes I was able to hit. I'm very stubborn...

For years now, I've been swinging back and forth between the two extremes of being a hypochondriac ("I broke a nail! Oh Lord- it's the lupus!") to being in total denial ("I haven't been able to feel my foot for 3 days. It'll pass. It's just lupus.") I think (I hope) I've finally found a balance, where I am able to live my dreams and keep my health.

Sometimes I have to binge-sleep after several long, tough days of too much work and not enough sleep, but I'm able to stay healthy, off the immune suppressants, and be creative and live a full life.

The truth is, if I'd never gotten ill, I'd have never had the courage to leave the unrewarding but "safe" world of retail and pursue my secret (even to me) dreams of sharing my songs with the world.

So here's a one of my non-medical funny songs about relationships. Because I don't want my whole life to be about being sick or not being sick. There's more to me- more to all of us- than that.
 

Benefits of Laughter

You all probably know I'm a huge fan of humor and laughter. Thought I'd share this infographic with you, courtesy of www.greatcleanjokes.com

By the way, if you're really into learning more about the benefits of laughter and hang around some of the people who are working in the field of laughter study, check out this great organization: www.aath.org or this one www.thehumorproject.org . Each organization has annual gatherings of wonderful folks from all walks of life, and I've attended and greatly enjoyed each.

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

stresssssssss (and lupus)

just got back from the doctor. sed rate=66, temp= 99.8. :(
my strict vegan + gluten free diet is not enough to counteract all the stress.
stress? what stress? Well, I got tons of work in March, plus I filed for bankruptcy, which really freaked me out, plus I'm writing a book, plus my mom sent me 20 boxes of moldy crap that I've left in their basement since having a stroke 7 years ago, which sent me into a fibro attack. I recovered from that only to end up with either morton's neuroma or plantar fasciitis (constant excruciating foot pain- unless i don't ever put any weight on my foot whatsoever, even to get up to go to the can). I went on "vacation"- meaning, we drove 2500 miles round trip, it rained the entire trip and i was in constant foot pain. While on "vacation" I went to a foot doc and he gave me vicodin. All it did was make me sleepy. My foot was still killing me. I finally go some acupuncture and aspirin and it's doing much better, but now I'm freaked out over the string of lupus-ish symptoms- fibro, swelling joints, foot pain, positive lupus lab results... Smells like i'm sliding back downhill towards either a hospital stay (NO!!!!) or prednisone (NO!!!!).

Sometimes I wish I were an "earthling" and I could just have a beer (not an option) or go for a jog (not an option) to blow off some steam and de-stress. Or drink a ton of coffee (not an option) and just power through the stress (not an option). The fact is, once you've got an autoimmune condition/ tendency, you have to make hard choices every day. One of my friends a while back suggested we go shopping and have dinner in the evening, and maybe earlier that day we could go do something else. I had to explain - to both her and myself- that i can only do one big thing a day. If I schedule 2, I might survive them both, but there won't be enough of me left to enjoy the second one. And it will ruin me for my one big thing the next day.

If I pace myself, and do only one big thing a day, I could very well end up doing 365 really neat things in a year. Well, maybe only 300, because sometimes my one big thing is laundry. Still, 300 neat things in a year is pretty great- barbecues with friends, going to the arcade, doinga comedy open mic. But if I don't pace myself, I can end up wasting a lot of time flat on my back in bed watching reruns, staring out the window, and popping pills to kill the pain.

The good part about knowing you have limited resources is (hopefully) you don't squander them on stupid stuff. One of my friends is raising 2 kids (he's a stay-at-home Dad and his wife has a corporate job). At night, he pursues his dream of being a songwriter. Well, being a husband and dad, he can't be gone all night every night, and he's busy all day with the kids- so he has to choose his opportunities wisely. And he tells me this helps him make better choices about the gigs he takes and how he spends his allotted "songwriter" time. It's not just those of us with serious illness having to make hard choices. And given the choice, like everyone else, if I could swap lives with my friend I would not. I've got some skills for dealing with the "devil I know" and would be overwhelmed if I had to learn an entire new set.

I can deal with this. I just need to vent sometimes.

i was able to talk my rheum out of putting me back on prednisone (for now) (I'm just not ready to lose my looks and my locks a 4th time if there's a way around it) and just get some fancy aspirin and topical anti inflammatory. but i'm going to have to start getting lots of acupuncture and learn to handle stress better or I'll be in for hospital stay/ prednisone hell #4. stress is the worst thing for autoimmunity, and stressing about autoimmunity is the strangest irony i can name at the moment...

Happiness is Good for you

I read a study a while back that said a negative stressor like getting yelled at can negatively affect your immunity for up to 12 hours, whereas a positive experience, such as getting together with friends for fun, can positively affect you immunity for up to 3 days.(It really shouldn't seem like some radical notion that being happy enhances the immune system.

In fact, in the DVD "The Secret," this same principle is touched upon: we have 60,000 thoughts a day (!). Thankfully, the positive ones have more power to affect your reality than the negative ones. Of course if there are no positive thoughts... that could be a problem.

The lesson? it's more important to have fun than it is to avoid stress.

My still newlywed husband and I (not quite 6 months yet) were invited to a big family gathering. We were extended family, as in Joe's sister-in-law's family. We've met a number of these folks before at birthday parties, etc.

So the Patriarch of the Day was Florio, who every year rents a big party bus, gives all his grandkids some money, and we go into New York City (from Yonkers) and go to Toys R Us. Then we go see the big tree at Rockefeller Center. some of us, including me, also stopped into St. Patrick's Cathedral, which is beautiful and has a life-size nativity scene in he sanctuary. I lit a candle ad said a prayer for my Aunt, who is struggling with cancer and related problems.

At the tree, which is also where the ice skating rink is, I was so fortunate to have ended up at that place during the very time that a Tuba Christmas was going on! Every year, for many years now, a bunch of tuba players gather under the Big Tree and play Christmas carols. Only tubas allowed! there were 450 tubas this year! I had heard of this because I played tuba in high school. I never thought I'd see it in first person!

We also saw the friendly neighborhood Spiderman on the sidewalk, 2 cops on horses, and Santa driving a stretch limo.

We all then had a huge Italian dinner at an authentic Italian place that feeds you for 2-3 hours straight. whew.

To top it off, we arranged for our neighbor to visit our little dog with her little dog for a little while and she kept them together for 5 hours! So even our dog had a great day.

We should be immune to anything tomorrow, always a good thing on Monday!

Speaking of fun- hear some funny songs at
http://www.thesingingpatient.com