Trying to Run Away from Myself

Summary of Post

My first 10 km! Also my first 10K in Vibrams! Also my first 10K with kidneys on strike! Could be a depressing post, don’t know yet. You have been warned!

Gracie's Komodosport Vibram Five Fingers.
Best bday pressie ever! Thanks hubs!

Post Port Dickson Triathlon Sprint – Onward Ho!!! Not…

Right on the back of my first tri (wonderful, perfect, dream tri for this tri virgin hehe), and completing my first 1.5 km open water swim with Cynthia (Olympic Distance phwoaarrrr *happy*), I was on top of the world! Best of all, my kidneys were behaving nicely, and fingers crossed I set my sights on a Half-Ironman at Desaru International Triathlon September 24 & 25. I forked out US$30 for 6 months membership at BeginnerTriathlete.com, for access to their great training plans. I was a member 2 years ago before being sidelined by illness, so I know they are good. I figured if I am not ready for Half-Ironman closer to the registration deadline, I’ll just do the Sprint instead :).

Then, I got Food Poisoning. (Note to self: AVOID Jusco Aeon Sushi King!) Day Two of Food Poisoning, kidneys started to leak protein and blood in trace amounts. Day Three, food poisoning symptoms less, but too late, proteinuria already serious (3+). By that time I already upped my meds – those hated corticosteroids (e.g prednisone, but I use hydrocortisone). Today is Day Five, massive proteinuria. I can just hope it will come back down in the next few days. I don’t want to get any weaker. I can't afford to get any weaker! Please meds, please work!

Anyway, yesterday I managed to complete my Bronze Medallion life saving certification at the Titiwangsa Golf Club. Today my training plan called for a 1 hour easy run. Usually, when I am relapsing like this, I don’t exercise much (re: 'Exercising with illness: Can?'). At the most, I get on my Orbitrac for 10 minutes and just move a bit.

Today was different.

Today I felt really frustrated. I’m sick of being sick. I’m fed up of ‘babying’ this body. So today, I tried a different strategy. I love running. I was desperate to run. So I did.

The Run

First, Do No Harm

Less than a week to go to my first Sprint triathlon at Port Dickson (23 July 2011) and it’s not quite ‘all systems go’ for Gracie. My kidney function appears to be better, but I’m weak from the couple days of peeing away all that protein and blood.  It usually takes a month to regain my strength after a relapse like this. And I don’t have a month. Not even a week.

Funny thing is I already know I could complete the sprint, thanks to the Tri Clinic on 3 July. Where I did the 800 m swim in 30 minutes, 20 km bike in 1.5 hrs and a 4 km run in 30 minutes. The last woman in the sprint (35 yrs & above) last year took 1 hr 45 minutes. So with my time of over 2 hours, I would be solid last! After that clinic, I had started looking to better my times tee hee. Just didn’t want to have the glamorous position of being last lah.

Well, today I re-revised my target for this race. I just want to finish.

I want to cross that finish line.

But I won’t say that cliché ‘I will do whatever it takes’, because… I won’t. I’m not going to push myself at the expense of my health and recovery.

I’m going to go slow and enjoy my first sprint triathlon. Every. Single. Minute of it.

Just you watch me!

Looking forward to last place J


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xo Gracie

Exercising with Illness: Can?

Summary of Post

I love exercising but can get sick if I push too hard. What kind of sick? My kidneys signal their protest by going on strike, leading to relapse of a chronic autoimmune disease that afflicts me (Henoch Schonlein Purpura). Yet, exercise is good for me, so I continue to do it. I need it! For now, I have to do it in moderation. This post outlines my exercise routine. 

Just what is my problem? Can I exercise?

Good question. I google 'Henoch Schonlein Purpura and Exercise’ and come up with just about zilch. Not surprising since only 5 people per million are diagnosed every year. HSP is quite rare. Last I heard I am one of less than 10 people in Malaysia who have this. So, can I exercise? I guess I will have to figure this out myself. 

There’s information on exercise for a more common autoimmune disease Systemic Lupus Erythematosus (SLE) or Lupus. Lupus sufferers can have joint pains (like me), skin rash (like me), fatigue (like me), sometimes kidney problems (like me), and sometimes their immune system attacks their own blood and brain (thank god, not me!). Some have debilitating joint pains that really limit their mobility and ability to live a normal life. And some die from complications involving the kidneys, blood and brain. There is no cure.... yet. 

One difference between my friends with lupus and myself, is that I get hit with everything, plus gastrointestinal problems - my insides bleed. I know, I know, I’m just

PD Triathlon 2011: In My Dreams Only?

Summary of Post

Struggling with kidney problems, all I can do is wait and see if I can recover before registration closes for the PD Tri (July 1). At the moment, it looks unlikely (Note: 23 July 2011, I did it! Race report here.). Nice thing though is, in my dreams, I am strong and whole, and running free!

Recurring Dream

It’s pretty cool that even when my real body is sick and weak, sometimes in my dreams Avatar Grace is whole and strong. I love my flying dreams, where I soar above the green fields and dodge the occasional power line.  My current favorite is my running dream. I am running lightfooted as a deer along a forest trail. Although I am going fast as can be, I don’t feel like I will ever get tired. Every breath I suck into my lungs revitalizes me. My body feels powerful. In this running dream of mine, I don’t have kidney problems bothering me… don’t feel weak from losing protein and blood in my pee ... don't have sharp arthritic pains shooting through my joints … I just … feel … good…  

OCD, Me?

“Don’t be so obsessive!”, my wonderful doctor of 12 years lectures when I tell her that I test my pee (with a dipstick)  for proteinuria every morning. I smile as I remember her kind-hearted scoldings, and I am still smiling as I journal the results of this morning’s dipstick test: “Trace” proteinuria, the dipstick says. Muuuuch better than the 4+ (ridiculous) reading on 18 June (which was the day before the Hoohathlon). Once I get down to “negative” proteinuria, and feel settled, I can again start tapering off the dratted meds (corticosteroids) that I take for my illness (Henoch Schonlein Purpura). Hopefully that happens in the next few days, so I can sign up for the PD Tri! If not? Well, if not, I’ll just go to PD and do the triathlon distances there whenever I am good and ready. There’s much to be said about ‘Mind Over Matter’, but if I push mindlessly when I am ill, it will indeed matter – it will kill me. :p . Don’t even get me started on ‘What Doesn’t Kill You Makes You Stronger’…

The Week Past

Didn’t do a whole lot of training this week but put in some time every day after work. Just enough to break a sweat, which is 30 minutes on my elliptical machine. My body is limited to gentle namby pamby exercise, however, my mind seems to have gone into Quantum Hyperdrive Fantasy Mode. I imagine myself swimming the 800 m (sprint distance) with the salty waves lapping against me… the transitions … the 20 km bike ride on my trusty road-slick-tyred mountain bike, wind against my face … my legs pumping through the 5 k run. I am grateful that I have memories of my past life (before and between bouts of illness) that I can draw on for my imaginings. We'll know by next week's post if the PD Triathlon is 'Only in my dreams'...

“A healthy man has many wishes, but a sick man has only one…”

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xo Gracie

Tri-ing For Me: Triathlon after Illness

I am going to do my first triathlon this year.

Just being able to say that makes me so grateful. I savor each word as it rolls off my tongue. A surge of emotion wells up deep within my chest, and I feel like I could burst.

My life before
Having been sick with a rare autoimmune illness for a third (9 years) of my life, I had been through some pretty difficult times. This illness struck me down suddenly and rapidly. I found myself in hospital, swollen, colicky and nauseous. I was poked, prodded and jabbed, and underwent an interesting kidney biopsy where a few choice pieces of my left kidney were cut out from me while I observed the entire procedure. 'Henoch Schonlein Purpura' was what the doctors said. Statistically speaking, I would lose kidney function in 10 years, would have to be on corticosteroids for the rest of my life.

Gracie  back in those days, with puffy steroid-induced moon face.

For the next 9 years I was consumed with finding a cure. I tried every diet you could think of, every therapy out there (you can read about my gastronomic mis-adventures here) The doctors couldn't really tell me why I was sick, much less what I needed to do to get better. I continued to work, and completed my Ms and PhD degrees, during this time. I stayed active, but could no longer participate in many of the outdoor activities that I loved - any overly strenuous physical activity caused my kidneys to start acting up. I was constantly holding back, always having to remind myself to take it easy, not push too hard.

Fear
There was something about being chronically ill and in pain that changed the person I was. I became afraid. Afraid to push myself too hard. Afraid to eat foods that I thought (rightly or wrongly) were bad for me. My long-term use of the corticosteroids caused my skin to become paper thin, and I became afraid of falling or hurting myself. I bruised easily. I had developed osteopenia (early stage osteoporosis) and was fearful of falling. It was a sick fear that permeated my psyche, and despite my naturally optimistic and positive personality, this fear was constantly present. (you can read 'me and my steroids' here)

Fight
I felt I was fighting for my life, and time was running out for me. I relapsed frequently, each relapse worsening my already fragile health and further damaging my kidneys. Eventually I developed multiple chemical sensitivities and allergies to everything from perfumes, newsprint, car exhaust, you name it. I felt helpless as my world became smaller and smaller. I hardly dared to venture out of my safe house for fear of being exposed to odors and other substances that made me horribly ill. Even taking the steroids ceased to help.

Turning Point
I somehow managed to complete my PhD and executed an elaborate plan to keep myself alive in a new safe office and safe home. I spent my after work hours scouring medical journals, reading extensively about weaning off steroids and building adrenal sufficiency. After 3 months on an Atkins-type high protein diet, I was successfully reducing the steroid doses. And after 8 months, I was steroid-free!

Today
Nearly one year later, I still can barely believe that I am free of medication, and show no signs of illness or sensitivity whatsoever. I am cured!

So.

I am going to do my first triathlon this year.

xo Gracie

(Note: I unfortunately had my worst relapse a few months later following a family crisis but recovered somewhat after almost two years. I recently completed a mini-triathlon and went on to complete my first sprint triathlon too! This is the hand I've been dealt and I'll play it the best I can. I'm just grateful to be alive. Grace, 25 July 2011).