Tuesday, July 26, 2011

Zen And The Art Of Kickboxing (With Chronic Illness)

I’ve mentioned before that yoga is not really my thing.  While it certainly is a workout, it’s not enough for me.  What I mean is, I’m too high maintenance for yoga.  I need to be moving, need to be mixing things up.  If I wanted to be left to ruminate on my own thoughts, I would stay home.  That’s something I already do.  I don’t need new age music and the smell of sweaty feet to awaken my true self.  And I mean no disrespect to people that truly enjoy yoga.  I wish I did.  Again, it’s just not my thing, and I think I’ve given it a pretty fair shake. 

And I’m not a runner, either.  I have tried to convince myself otherwise, even with illness, but I immediately feel how hard running is on my body.  And I don’t like it.  When I work out, I want to do it hard, but not to the detriment of my already fragile joints.  I’ll happily walk all over the place, though.  And my standard workout routine is doing a walk aerobics video that has one, two, and three mile walks.  So I do each of those once a week.  (Although with all the traveling I’ve been doing this summer, my routine has gotten off, and I’ve been trying to eek out two three-mile walks each week)   

So, if not yoga and not running, what?  Well, I’ve decided to take up kickboxing, not so much as a way to learn personal protection, but as a way to express my feelings in a different manner than I already do. 

When I first met with my instructor, we talked about my fitness goals and other things I was hoping to get out of learning to kick box.  He mentioned stress relief, and that was certainly a draw for me.  He ventured that you want to beat the shit out of something.  He said it, I didn’t.  I didn’t elaborate about what is causing my need to “beat the shit out of something”, but I couldn’t agree with him more.

For the past probably six months or so, I’ve been dealing with anger issues.  Not anger issues to the point that I need anger management, but anger issues that are keeping me from focusing on more important things.  I’ve been working on channeling my anger, if not directly at the person the anger is related to, then at least, away from myself.

The last few years have been so totally focused on my health.  And not health in terms of getting fit or in shape.  Health in terms of not dying; health in terms of simply trying to live.  I’ve put so much time and energy into adapting to life with chronic illness, and trying to survive all of the other curveballs that life has thrown at me along with illness, that it’s really nice to have something else to put my energy into.  To put out everything I have to give when I get onto the mat.

I really like my instructor.  He’s pretty hot, which is a plus, but more than that, he’s teaching me how to distinguish between physical obstacles and mental ones.  He doesn’t let me cop out when things get hard, and honestly, I need that.

I’m not a quitter, but there are definitely times when I know I wallow in self-pity.  And I hate that about myself.  It easy to ratchet down the physical stuff when you don’t feel well.  So it’s also nice to be able to push the physical to the limit; to the point where I’m crawling on the floor, sweat dripping everywhere, totally wanting to puke.  Come on, you all know that I have masochistic tendencies.    

My instructor also emphasizes the fact that this is my time.  It’s my hour to be totally alert and focused on what I have to do.  My time to focus solely on making every move count and getting the most out of myself that I can. 

And when I think about it, doing an intense workout for an hour is so much less time than I’ve spent in much more challenging and less fun situations.  I’ve spent countless hours in doctors’ offices, getting blood work and procedures done, laying on the couch because I’m flaring, and generally trying to adapt to life with illness, that it’s time to focus my energy on something else.  It’s time to let go of all that.  It’s my time.  To do something I enjoy doing, regardless of how easy or difficult it is.

There were certainly some foibles at first.  My hand-eye coordination (or lack thereof) is clearly more of a problem than any limitations that my illnesses put on me, I’m sorry to say.

I’ve been amazed at what I’ve actually been able to do.  I think sometimes, unknowingly, we kowtow to illness a bit.  I know that I may be functioning at “higher levels” than some people with my illnesses, but everyone should do something.  Keep moving.  Find something that makes you feel good and good about yourself.  Illness is a full time job.  It can suck the life out of you. 

And let me tell you, there’s nothing more life affirming than kicking the shit out of a punching bag while a hot guy cheers you on.  Now you see firmly where my priorities lie.  But seriously.  Do something, even if it’s in the privacy of your own home and no one else is watching you.  It certainly does help to have a cheerleader, though, someone who makes you accountable and doesn’t allow you to wuss out; even when you are on all fours on the floor, trying to catch your breath.  And especially when you are sweating buckets and don’t even care that this is happening in the presence of a really hot guy.

It’s great to feel pain that’s not illness related.  That might sound weird, but it feels good to know that the pain I’m feeling – coincidentally more in my muscles than my joints at this point – is actually the result of working out hard.  I haven’t been able to say that in a long time.  I haven’t been able to feel that, because I’ve been too busy concentrating on my illness related pain (and rightfully so, I think).   

Of course, I haven’t been able to do every single move to perfection.   My legs only kick so high, and it’s hard for me to straighten my legs at the knee.  My elbow extension varies.  But my instructor has taken this all in stride.  He’s found workarounds for some things, adaptations if you will, and rarely, we scrap certain moves all together.

I ultimately chose to go with private lessons because I was self-conscious about being in a class where people older than me could kick higher than me.  This is purely my own issue.  But I didn’t feel like I’d be able to fully concentrate if I was worried about other people looking at me weird.  Although sweating buckets and getting my ass kicked by and in front of a really hot guy doesn’t help matters, either, but that is a whole other story. 

The Zen thing about kickboxing is that it forces you to clear your head.  You have to concentrate on the moves, or else run the risk of missing the bag and punching the air, or better yet (although it hasn’t happened to me yet), snapping yourself in the face with the stretchy band.

Or maybe what’s Zen about kickboxing is that it’s not really Zen at all.  It’s awesome.  It’s kick ass.  And it makes me realize that I’m tougher than I thought and not quite as fragile. 

I’m challenging myself, and challenging my body to work out hard, to go to places that it hasn’t previously gone before (either healthy or sick).  All I can really say (to both kickboxing and illness) is: Bring it!

(And if you’re lucky, maybe I’ll post some pictures eventually…)

Tuesday, July 19, 2011

On Going It Alone

Wow!  It has been a jam-packed few weeks.  And I know you’ve all been wondering where I am and what I’ve been doing. 

At the start of my traveling, I wasn’t quite sure what to expect, from both a work perspective and a personal one.  I was definitely concerned about how I would do, health-wise.

Ultimately, in general, I did much better than I was expecting.  I navigated new airports and new cities, and explored new parts of places I’ve been before.  I truly felt grown up traveling for “work”, and I definitely maximized my time and took the work part very seriously.  I basically did 24 interviews in about six work days, along with collecting various other types of data. 

But my sleep schedule, eating, and medication schedule all took a hit.  I was dealing with crazy time changes (ironically I think the one hour difference in Chicago proved worse for me than the three hour difference in California), leaving destinations at night and getting home in the early morning, eating coffee shop meals, and taking my meds at odd times or not at all (this only happened twice).

The thing I do have to admit, though, is that because of my graduate student status, and teaching a class in the spring, I have no official job other than working on my dissertation right now.  So I have been able to catch up on the rest that I’ve lost while traveling (and I definitely need to catch up).  I can’t imagine how I would do if I had a full time job to come home to (other than illness, of course, because even though I left, it never will – I talked about wanting to leave RA in dust in my latest Health Central post). 

To let you know what I’ve been up to, without giving too much away at this point, I attended the Little People of America conference in Anaheim, California, and the MAGIC Foundation conference in Lombard, Illinois, just outside of Chicago.  I attended these conferences for my dissertation research.   

One thing that struck me about the utility of these conferences is having the opportunity to spend time, in person, with like others.  And I wish that there was something like that for some combination of chronically ill people.  While I do have an amazing online support system, it is amazing to see people come together in person, for what proves to be something that people look immensely forward to all year long. 

I wish I had that, too.  Especially considering that while I am short stature, I didn’t perfectly fit into the categories of persons at either conference.  At the start of these trips, I felt very unsure of myself.  I couldn’t quite put my finger on why, and then I realized that I had never stayed in a hotel room by myself before.  And this fact brought up a lot of insecurities for me.  And being an outsider at these conferences definitely didn’t help my anxieties about being alone.   

It’s hard for me to admit that five months after my breakup, I’m still reeling.  I wonder when I’m going to wake up from this nightmare.  And that any minute, he’ll call or show up. 

It’s also hard because this time last year, all of my friends were asking what I’d say if he proposed.  They all had their theories about when and where it would happen.  But ultimately, it didn’t.  Not even close.

I go it alone because I have to.  There’s no other choice.

On the other hand, I’m used to spending time alone, with my own thoughts.  The absence of health is a lonely, solitary pursuit.  You are the only one who fully experiences it.

So, as usual, I think these trips proved to be more about personal rather than scholarly growth.  I had to abandon my comfort zone.  I had to travel roads that I hadn’t before.  And I did it all, by myself (or I did it, all by myself).  (Although I did have a run-in with a spider in my hotel room, which necessitated getting a very hot hotel worker to kill it for me)

I do have some health stuff going on, beyond trying to recover from traveling, but I’m not really ready to talk about it just yet.  I really need some time to process everything, but I won’t really get to do that because I have an impending medical procedure coming up in a few days.  After that, I’ll have to get my head back on straight and start working on the dissertation in earnest. 

So that’s my life right now.  Work, illness, work, illness, work, illness, repeat, repeat, repeat.

Tuesday, July 12, 2011

Guest Blogger: Christine Schwab

Wow!  I haven’t posted in a while.  I’m back and forth traveling right now; it seems like all I do is pack, unpack, and re-pack.  I plan to get back to a more consistent blogging schedule next week or the week after. 

I recently read “Take Me Home from the Oscars” by Christine Schwab. Christine is a fashion maven who has appeared on a variety of daytime news shows.  She also has rheumatoid arthritis. 

In my absence from blogging, I am excited to have Christine here today, talking about her book.   

You chronicle your journey with RA in your book, but could you please provide a brief summary of who you are and your journey with RA for my readers who haven’t read the book?

CS: I have worked my entire career in the beauty and fashion business. Reaching the top of my career I was working on television, sharing fashion and beauty trends with viewers and doing make-overs. Often I would be on two shows a day like Oprah and Live with Regis. I married my dream man during this time. My life was perfect. Then one day working in NY I started having severe pain in my feet. I chalked it up to over doing it on the tread mill. It turned out to be RA. I was shocked and devastated because I perceived the disease to be for older people. How could someone whose life was about health and appearance get this disease?

Your story is like so many others.  We might not all be TV stars, but so many of the women I’ve talked to, including myself, were tried and true Type A-er’s prior to getting sick.  How did you, and how do you continue to, balance your work and health?

CS: I took one day at a time. It was the only philosophy that really worked for me. If I had a week of TV shows coming up I couldn’t worry “would I be healthy enough, could I manage my pain.” I simply had to not over think because that would aggravate my RA. Worry is our worst enemy. Plus my Doctor, who I dedicate my book to, told me over and over that I could do this. I could get through what I needed to do for my work and family and I had to hang on because there were a lot of news drugs in the pipeline for arthritis. He kept the “hope” carrot dangling in front of me and it worked. A quote from my book is “what you can't control, manage” and I so believe this to be true.

My Doctor did get me in a research program at UCLA and I went into remission 11years ago.

What has been your most difficult experience with RA overall?

CS: The pain. When you hurt, it wears you down. It permeates every part of your body. Chronic pain is so hard to deal with. For me, a balance between anti-inflamatories and pain Meds worked best to get through the really tough days.

My secret was to tell myself tomorrow would be better.

What has been your most difficult experience dealing with RA given your line of work?

CS: My work looks glam but in reality there is a lot of running around finding clothes, long hours on your feet and stress over making it all come together on TV. Combined they cause flare ups. That and trying to hide a weight gain and moon face from steroids on TV. It’s interesting how some people are very observant and others totally unaware.

What made you decide to write a book? 

CS: I have written two fashion books before. I love writing. After hiding my disease for twenty years I decided I needed to help change the negative and out-dated perception of arthritis and the best way to do that was with a memoir showing the juxtaposition of my life of glamour vs. my life as a research patient. The contrast staggered me and I was in the middle of it. I felt it would make a great story about overcoming adversity and based on the response from readers, it has.

What is the significance of you writing it so long after your diagnosis?

CS: I could barely deal with my health for a long time let alone write about it. I needed to get perspective on the disease. Writing any earlier would have been a different book. This book will help people because I learned how to help myself.

What is the significance of the title of your book, “Take Me Home from the Oscars”?

CS: I had covered the Oscars for TV many times but on this particular evening I was a guest with my husband in an 11th row seat. But my arthritis flared and took over. I open this book with this event. I don’t want to give it all away! But I may have been the only person to leave the Oscars before they began.

You are diagnosed with RA early in your marriage to your husband Shelly.  Do you have any secrets to marital success when chronic illness (or specifically RA) is thrown into the mix?

CS: Some will disagree, but you can’t share every ache and pain with your mate. I don’t care how much you love each other or how close you are, you can’t let a chronic illness take over your life. You have to have some break time and so does your mate. Nobody can listen to complaints or talk about health all of the time. Nor should they. Be interested in your mate. Talk about him. It will allow you to forget about yourself for a bit.

In your book, you talk about the horrors of Prednisone (which many of us are aware of) and Methotrexate lung disease (which I had never heard of, despite being on Methotrexate myself).  What medications/treatments have you found that have worked for you?

CS: Prednisone has severe side effects but it also got me through work when nothing else would. It saved my career many times.

Methotrexate put my arthritis in remission even though it attacked my lungs. The drug I tested in the research program was Enbrel and it worked for me. Eventually enabling me to stop the use of any other drugs.

You talk a lot about your experience in drug trials.  How important do you view drug trials being for RA patients?

CS: VERY! You don’t go into a drug testing program unless you are out of choices. They are scary. But they advance research that will help millions. I went in full of hope. I came out with relief.

You also talk about your experience with multiple rheumatologists.  Would you recommend that other RA patients “shop around” for doctors and/or seek multiple opinions?
CS: Don’t stop until you find a doctor that offers you hope. That NEVER gives up on you. That believes they can help you. Don’t settle for anything else. It’s your body and your life.

You were diagnosed with RA before it was “cool”.  What do you say to people that have many more drugs available than you had, and still cannot find relief from RA?

CS: Never give up. Keep your arthritis under as much control as you can to protect your joints and keep aware of what drugs are being tested and when they will be ready.

I hear too many people say they’re afraid to try new drugs. Balance the quality of life. If you don’t have a good quality now, why not try something new? I am the long term study for Enbrel. People ask me if I’m afraid. My response is I have my life back. Nobody knows what the future holds. I will never look back and regret being the first. I’m loving life.

What advice would you give to young(er) RA patients like me?

CS: Be proactive. Keep your inflammations down. They cause joint problems the longer they’re inflamed. Try new combos of Meds. Don’t be afraid. Find the right doctor for you. You must take the lead and be involved in your care and treatments. Don’t take no for an answer. Persevere.

What kind of work are you doing, aside from writing your book, to raise awareness about RA?

CS: I am a spokesperson for the National Arthritis Foundation. We are doing some exciting projects together. I have a Facebook page. I Tweet. It keeps me in touch with arthritis.

How is your health at the present moment?  How do you envision your future (in general)? With RA?

CS: My health is great. I hope to continue down this path of wellness. But whatever happens, I now know I can deal with it. I envision helping millions deal with arthritis. I envision changing the perception of arthritis so that people will know there are good treatments available. Arthritis today is not the same as it was for our parents and grandparents. And this is only the beginning... More new drugs are on the way.

Thanks, Christine, for sharing your story, and for taking the time to answer my questions in such a thoughtful manner. 
Take Me Home from the Oscars” is available on Amazon.com. 

Christine is also the author of “Quickstyle” and “The Grown-Up Girls Guide to Style”.  Visit Christine at ChristineSchwab.com

*I received a free copy of this book from the publisher, Skyhorse Publishing, Inc.  However, my choice to have Christine as a guest blogger was my choice, and had to do with my opinion of the book.