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:

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):
http://forum.wehavelupus.com/forum.php

 And this one seems quite active:
http://chronicbabeclub.ning.com/

This one has an active lupus section, but also sections for all kinds of other illnesses, and over 94,000 members:
http://www.healingwell.com/lupus/

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):
http://tinyurl.com/45gzkvq

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): http://meetup.com/

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.
http://lfa-inc.blogspot.com/

This is my blog:
http://lupusandhumor.blogspot.com/

Carla
~~~~~~~~~~~
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"
http://www.thesingingpatient.com
http://tinyurl.com/4j8qfc4

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.

What does being diagnosed with a serious disease mean to you?

What does being diagnosed with a serious disease mean to you?

This is a really interesting question, and oddly, one no doctor has ever asked me.

Talk about a great open-ended question. If you're at a cocktail party and want to get someone else to handle the bulk of the talking (specifically someone who has been diagnosed with something serious at some point in life), this question will let you off the hook for a good half hour. Come to think of it, I guess that explains why doctors don't ask that question.

So what does it mean to me? At first, it meant an escape from an unhappy life and a fresh start. Then, it meant a choice between either working constantly at being healthy or just giving up and taking drugs and powering through, settling for less than optimal health and not looking my best. Now, finally, it means achieving balance between taking care of myself and taking care of everything else. But I know this now: I have to put myself first, or there won't be any of me to put anywhere else.

read what other lupus patients had to say about this question at the Lupie Log:
http://tinyurl.com/4pbe8e4


Carla Ulbrich, The Singing Patient
_______________________________
Humorous songwriter, Speaker, and Author of "How Can You *Not* Laugh at a Time Like This?" Get the book: http://tinyurl.com/348hroc

hear the songs: http://www.thesingingpatient.com

Believable Affirmations

Some of you have probably already heard about affirmations.
Many people suggest using affirmations to create change in your life, whether it be improving your health, your relationships, your financial position, your weight, stopping a habit such as smoking, etc.

I remember when I first heard the idea of affirmations. It was in church. We were supposed to "name it and claim it." In other words, you would just declare out loud repeatedly all day long things like "I am incredibly healthy! I have all the riches in the world! I am thin and gorgeous!" The idea being to make statements that represented not where you actually were in life, but where you wanted to be. And that this version of you already existed in the spirit realm, you just needed to claim it for it to manifest in the material world.

OK, that's the idea. Here's the reality, for me, when trying to make statements that are the exact opposite of my everyday reality.
"I am wealthy and have abundance"
My brain mocks me: "You are an idiot. Look at your checking balance."
"I am in perfect health"
My body "Oh yeah? Well, *I* am in pain and I'm not letting you forget it"
My brain chimes in "Yeah and I saw your lab tests"

How do we deal with this committee in our heads?

Let's just look at the definition of affirmation, shall we?
[af-er-mey-shuhn]

–noun

1. the act or an instance of affirming; state of being affirmed.

2.assertion that something exists or is true.

3. something that is affirmed; a statement or proposition that is declared to be true.

4. confirmation or ratification of the truth or validity of a prior judgment, decision, etc.
5. Law. a solemn declaration accepted instead of a statement under oath.

And that is the problem- part of me knows this stuff just is not true. And maybe it's true in a spirit realm, yada-yada-yada, but the rest of me is just too immersed in the real world and my years of experience to the contrary to shout out things that couldn't be less true. All is does, frankly is tick me off and make me feel sorry for myself. And make me want to avoid church because I feel like a failure.

So... here are 2 more (in my mind) reasonable approaches:
1) keep doing this, and when your mind objects, tell it "I know it isn't true yet, but I'm giving you instructions. I'm programming you about how things are going to be in the future.

2) if that doesn't work, try using what I like to call "believable affirmations." These are things that, instead of being 180 degrees off from reality, are instead just a few degrees off.
For example instead of "I am living in total abundance and am wealthy beyond measure" how about "I am still living indoors." "I still can afford groceries" Those things are true, and in some parts of the world, would make me very wealthy. I celebrate the things that are going right, however small, and work my way up to the bigger things. No one goes into the weight room and on their first visit, tries to lift the heaviest weights. (OK, a few guys do, but they're morons). Reasonable people, people setting themselves up for success instead of failure, start small, achieve small successes, build confidence and take a next, slightly bigger step.

I encourage you to start small, but when you find yourself thinking about lack, about things that are bumming you out, and all that you do not have, challenge yourself to say a believable affirmation, even if it's "well I'm not the biggest jerk that ever walked the earth."
Try it. Let me know how it works for you.

Carla Ulbrich, The Singing Patient, is a comedic songwriter and the author of "How Can You *Not* Laugh at a Time Like This," available now at:
amazon.com: http://tinyurl.com/348hroc
http://www.tellmepress.com
http://www.thesingingpatient.com