Monday, February 21, 2011

Feeling Like Myself

For me, when I'm really sick, all I want is to feel like myself again.

But in 2002, for the second time I found myself at the bottom of the downhill slide to severe illness, sitting there with congestive heart failure, kidney failure, having had a stroke, and unable to get up or down one stair - well, it was going to be a while before I could physically do all the things that the healthy "me" could do. However, because my illness primarily affects my body, and not my mind, I still had my mind to have fun with.

What makes me feel like "me?" For me, most of all, it's being creative. And for me, being creative means writing, singing, making music. So at my lowest point, when I was so sick that it truly frightened all my friends, I found "me" again as I started writing songs about my medical problems. Seems odd that writing about my problems would distract me from them, but it did.

Now keep in mind, I could not play the guitar at that time. My left hand did not work because of the stroke. So, I had to find a way around that limitation. What I ended up doing was taking other people's songs and re-writing the lyrics (parodies) until I could get my hand back. Meanwhile, I got a ukulele, which requires very little hand strength, and I played that as my own sort of self-created physical/ occupational therapy.

What do you like to do that's creative? Poetry? Visual art? Knitting? Blogging? Journaling? Singing? Is there something you love to do that you can still do in some form? How do you express yourself?

Here is one of my creations that, if you also have a chronic illness, I'm sure you can relate to. Sittin' in the Waiting Room:

Wednesday, February 16, 2011

Finding Support

When you're feeling lousy, it can be hard to do something like get up and ask for - or even look for- help. I have been there. But I want you to know things can get better.
They don't usually get better all by themselves, though. It does take some work.
And I know it can seem hopeless, and endless at times.

But it really can get a whole lot better. It has for me. I was so sick I had a stroke and kidney failure, congestive heart failure, anemia, the whole 9 yards. I am now married, got my hair back, kept my kidneys (they are functioning normally), got full function of my hand back, and I'm happy.
I work out, teach guitar, wrote a book, I travel, I perform comedy-music shows, I go out and have fun with friends. I can even get an "A" on dance dance revolution. In fact, sometimes I'm doing so well, my lab tests turn up completely normal.

You would never know I had lupus if I weren't sitting here typing about it.

I say all that not to brag, but to let you know there is hope.

But none of us get better all on our own. We all need help, including and especially emotional support.

Not everyone is fortunate enough to have a lupus support group in their town. But there are some other resources.

There are lots of great chat rooms on the web, some of them specific to lupus. I like this one (though I haven't been on it for a while):

 And this one seems quite active:

This one has an active lupus section, but also sections for all kinds of other illnesses, and over 94,000 members:

Of course, meeting face to face is even better, if you're feeling up to leaving the house.
Start with the Lupus Foundation of America (LFA):

If there aren't any chapters of the lupus foundation in your area, there may be some meetup groups. Go here and enter your zip code (Some groups cost a few dollars per meetup; some don't):

Sometimes there is a support group at your local hospital. Open up your options by attending groups for any autoimmune disease.

Additionally, when you're surfing around on the internet late at night lonely, bored, or in pain, there are a number of lupus blogs out there you can read (including mine) by bloggers who post about their journey. You can read, leave comments, or - if feeling ambitious- start your own blog to vent feelings and ask readers to interact.

This is the lupus foundation's blog, but if you look along the right column, there is a list of links to a bunch of blogs written by lupus patients.

This is my blog:

Carla Ulbrich, The Singing Patient, is the author of "How Can You *Not* Laugh at a Time Like This? Reclaim Your Health with Humor, Creativity and Grit"

Saturday, February 12, 2011

Being normal is overrated- or is it?

"I just want to be normal."
There are a few times in life that make us say that
1) being in Junior high school
2) lying around in pain after being diagnosed with something chronic and incurable

Junior high school aside, I never wanted to be normal. Exceptional, yes. Strange and wacky, definitely. Outstanding, indeed. Memorable, talented, funny, smart, anything but normal. Up until I got sick. Then, suddenly, "normal" started looking pretty good.

I recently went through 6 months' worth of PT for tendinitis, and I'm much stronger in my back and arms now. I also did some sessions for my back,  because for years I've been crawling up the stairs, as my legs would not support me. Now I am in the kind of shape that most normal people are in when they show up to start a fitness regimen. I've graduated from "remedial" to "normal."

But naturally, once I got back from being "sickly and weak" to "normal," my desire to be exceptional resurfaced, and I am again dissatisfied with being simply "normal."

First I want to tell my friends with chronic illnesses that it is possible to get back to feeling "normal." And if that is your goal, 1) it's attainable and 2) it is a worthy goal, and if you stop at that, I got no problem with it.

Sometimes, you're falling apart so fast you're just trying to not die.
Like, the three times I've gone into kidney failure- my muscles started wasting away, I got so weak I couldn't get up and down the one stair to the outside of the house.
And I gotta say, the hospital is certainly no place to get in any better shape.
How can you regain your strength when they don't want you to leave your bed?
Prisoners have a better shot at getting healthy than hospital patients.
I hobbled into an emergency room once with chronic pain (and kidney failure) and after a week in a hospital bed, I couldn't even stand up without a cane and -no lie- a giant leash around my waist.

Add to that the fact that stress can trigger any illness, and you do have this worry in the back of your mind that if you work out too hard, you're going to end up sick all over again.

Add to that the pain factor (who wants to exert themselves when it hurts enough just sitting around?), and you've got a mess of challenges to overcome.

I have gone from very sick and weak to "normal" 3 times now, and this 3rd time was with the aid of Physical Therapy, but the other 2 times I did it on my own. The first time, I started with walking. I'd set a goal to go just a little further every day, starting with just going to the stop sign and back. When I got up to about 2 miles, I joined a gym, where I used a stationary bicycle (I rode so slowly that it cut off because I guess it thought no one was riding it, but you gotta start somewhere!). Then I joined a bicycle club (I was the slowest one in the club, and was usually riding way behind everyone else- but the key was to measure my progress against what I could do the week or month before, not against what others were doing). As long as I saw progress, I was happy with myself.

The second time I got sick and got better, I was too weak to walk. My legs were blown up with water retention from the congestive heart failure, so instead I got in the pool and held onto the side and kicked. Then I swam. Then I walked.

The third time, I was really weak but I had good insurance and access, so I got a prescription for PT, and I went to a sports medicine place for 6 months. When I "graduated" I got a regimen of exercises to do on my own to stay in shape.

With or without a PT, the idea was the same each time: start really small, deal with the pain issue (heat, ice, massage, whatever works), do exercise that doesn't aggravate the pain (swim, walk, cycle), set *gradually* larger goals, and watch inspiring movies and read inspiring books to keep yourself going. Maybe join a club of some sort for the social aspect, if you can find one where you won't feel left behind by the more fit people. And if you have setbacks, back up a bit and start over. Because in the words of Rocky Balboa, "It's not how many times you fall down, it's how many times you get back up."

And now that I am "normal," I've set my sites higher, and am looking into what I can do next, because I want to have *fun* living inside a body- wouldn't it be great to celebrate living in a body, not just try to tune it out all the time?  It's certainly what I did before the illness struck. So what's next? Tap dance lessons? Aerobic dance? Soccer club? My plan this year is to explore some of these until I find something fun. I think that is what a lot of normal people do.