Feeling HOT, HOT, HOT

After several years of wanting to try hot yoga, I finally opened myself up to the heat. I started regular yoga around 6 years ago, practicing on and off, mostly sidetracked by periods of illness and a much too busy lifestyle.  The financial aspect of yoga has been difficult, as well. The last two years, I’ve practiced only at studios that I’ve been able to get a deal online or through gift certificates from loved ones.  Since hot yoga is even more expensive than regular yoga, it was low on my list of options.  I was also nervous about the heat, wary about the amounts of sweat, and intimidated by the hot yoga culture that has developed in the last few years.  I felt like I didn’t “fit in.”

A few years ago, a friend sent me an article about a woman living with lupus and her experience with hot yoga.  As soon as she started hot yoga, her symptoms slowly fell away, including the butterfly rash across her cheeks.  Her lupus went into remission and she continued her practice, eventually becoming an instructor and opening her own studio.  I remember being inspired by the article, but not being in the physical or emotional place to take any action.  I did, however, tuck that article away in my mind.  I knew it was something I had to try.

My work family got me a two-week hot yoga pass for my birthday, which I plan to use during my recovery after my 10K race next week.  Last night, I was on the website learning more about the studio and trying to psych myself up for my first class.  Amidst my browsing, I also stumbled upon a notice that another hot yoga studio was holding a free class and that there was an online deal for 80% off a 2-month unlimited pass.  I took that as a sign that I should go and try it out.  I was sweaty.  I was shaky.  I was slippery.  And I liked it!  I felt slightly dizzy only at one point, but otherwise, I felt great.  The heat really helped to relax the tightness in my body, leftover from years of pain and tension.  Don’t get me wrong, I’m no yogi, so it was challenging, but it felt doable. It felt possible and that’s all I’m looking for.  Possibilities.

I bought the online deal and that, along with my other pass, means that I am officially embarking on a sweaty, hot yoga adventure. Other than my first hot yoga class, there have been other exciting events since my last post:

  • My 2nd year of adult jazz classes ended with some Bollywood-inspired hip shaking at our recital last week!
  • I turned 31!
  • My 2nd blood tests came back and my white blood cell count went from 1.5 to 2.8!!  So much gratitude for all the love and healing vibes I’ve received over the last few weeks.  I don’t know what happened, but I am so thankful that my body has been given more time to heal and function without the use of prednisone.

So, things are looking bright despite the rain outside.  And oh, did I mention I’m playing on a dodgeball team?  An update post coming soon!

A New Low

1.5:  The lowest white blood cell count yet.

My conversation with the rheumatology nurse left me with no doubt… little white pills are most certainly on the horizon.  A re-test is planned for the end of the month, so I have two weeks to increase my count enough to plead my case to remain prednisone-free.  At this moment, however, in the glare of an undeniably dangerous WBC, I can’t help but feel disheartened.  There isn’t much lower it can go.  I may not have a choice.

Remission(ish) & The Next Epic Adventure

I just took a peek at Lisa Ray’s blog and there she was, with her tiny spirals of post-chemo curls and her cancer carol of the moment: “I wish you a long remission, I wish you a long remission.”  And I thought, my hair is back, too, Lisa!  I’m in remission, too, Lisa! … Okay, remissionISH

Lisa Ray and I, we’re an entire disease apart, but when I saw her prednisone-induced puff face on the news over a year ago, our somewhat mirrored experiences gave me hope… and a companion in the fight to get better.  I check in on her every now and then, and it makes me happy to see her proclaim herself as a cancer graduate, a survivor in remission.  She has also, by choice, stopped taking “upkeep medication” since there is no proof that they will keep her in remission longer.

Her decision made me revisit one of my most enduring thoughts:  Will there ever be a day when I can trust my immune system enough not cause cellular apocalypse without major prescription protection?  Will I ever be able to live in my “natural body” again without having to accept crippling pain with the package?

Remission is when symptoms disappear completely for a long period (over 6 months, usually).  This is where the “ish” comes in. I still have Lupus symptoms, but the ugly, nasty ones like tissue, joint, and organ inflammation are mostly incarcerated in the House of P & P (Prednisone & Plaquenil – and lingering traces of Methyltrexate, I suppose).

We pause for a White Blood Cell Update: Last blood test showed I am at 3.0/4.3.  Big M is still banned until next month, when I have my appointment with Dr. H.  Then, (you guessed it) more blood tests.

I guess my point is that I have been given my body back, not fully, but with the proper upkeep, things are actually doable again.  I can finally move, really move. I’ve been updating you on boring medication changes and reflecting on bull shit from the last year, but I haven’t told you what I am doing with this crazy opportunity I have in front of me – this time of remissionish.  I’ve said all along that being really sick is easy, it’s staying well that’s the dirty job, so it’s time to start trying things, to document them here.

After 9 years of hating my body, of cursing my body, I’m going to take it back.  I’m going to learn how to trust it, to move it, to feel part of it instead of separate, instead of an opponent.  And one of the ways I’m doing it is in the most embarrassing, challenging, humbling, and ridiculous ways I can.  Yes, that’s right, it’s already begun:

I’m taking a dance class!

I am excruciatingly bad.  After four classes, it is apparent that I am without a doubt one of the weakest students in class (intro jazz), but I am determined to suck with spectacular awesomeness.  It gets better – there’s also a recital at the end of the year.  If you thought my “Battle of the Brain” was epic, you ain’t seen nothin’ yet…


Wide Open Spaces

Last week, I poured a shot of Bailey’s into and through the swirl of steam wafting above my expensive, “restaurant gourmet” cup of Earl Grey Tea.  My favourite. The first drop of alcohol I’ve had in one and a half, maybe, two years.

That weekend, I took a birthday shot with a friend.  The next day, a drink with her birthday dinner.

Three drinks.  One week.   All delicious.  All moments of decadence; a sip, a taste of normalcy each time.  And it felt good.  It just did.  I lived a little.  I opened up a little space, a peep hole through all the angst I feel over the fight raging in all the places I can’t see – My body: All that blood, the disease, the chemical warriors who could turn on you at any second, who help you, then almost kill you, then bring you back again.

Don’t worry, I’m not going to drink all the time now, nor do I condone alcohol as a “picker-upper.”  At the moment, I have a window of time where I feel having a drink – one drink – is safer than it has been in this last ’bout of prescription medication warfare.  I’ve been off the Big M for a month and a half because of this white blood cell nonsense and it’s been over a year since my hospitalization… and God, more than that, I wanted to be someone who doesn’t have to think twice about having a drink, she just has one, because she’s 29 freaking years old and she’s with her friends and for God’s sake, it’s only one.

There’s too much to be afraid of.  So, I opened up some space… and filled it with a Bellini.

I realize I never told you about my experience at the “Lupus Day Clinic” back in June.  Probably, because it was actually a difficult experience for me to be immersed in Lupus for three days, up to my neck with info sheets and tips so you don’t look like “that,” or feel like “that,” or (don’t panic, now) get “that,” too.  It made me feel “temporary.”  That feeling good is always temporary.  And that’s okay, I knew that, but three days of reminders is a little excessive.  There were good things about it, too, of course.  I will tell you, but not right now.

Right now, I will share something with you that my ‘cross border, sister keeper and fellow auto-immune warrior shared with me recently.  She sent me this video link that speaks about one woman’s experience with a microbiotic diet, but I wanted to share it more because her story is a reminder that going through illness can gift us clarity and renewed purpose if we open a space wide enough to receive it.