Week 310 of logging my health progress.

Today (7/17/09) would be injection number 270 and counting.

I were diagnosed with RA (rheumatoid arthritis) and SLE lupus when I was 24 years old.  I later found out that it ran in the family.  Bummer!  That was my Xmas gift that year.

The condition progressively got worst.  I never slept through the night, as my joints would hurt so badly that I would rouse from sleep to find a more comfortable position.

Waking up in the morning was a torment. My fingers and ankles would stiffen up overnight.  What I took for granted soon became a harrowing task – opening the room door took a lot of determination and imagination.  I would let hot water run in the sink and stick my hands under it just to “loosen up” my rheumatic joint.

Brushing my teeth with a manual toothbrush quickly became impossible too.  So I switched to an electric toothbrush.  (Which soon created another problem – it wore out my enamel as I was pushing too hard on it.  Sigh!  There’s just no winning)

Then I had to dress myself.  Not able to even clench my fist, I would always grit my teeth trying to button my shirts / jeans or pull the zippers.  Mind over matter.

Then I took the stairs down – one step at a time – like an 80-year-old maneuvering the steps.

By the time I have walked Jessie (my rescued cocker spaniel) I’m almost 50% limber for the day.

This went on for almost 3 years.  I were only on oral medications that quickly took their toll on me. Hydroxychloroquine (Plaquenil) caused me to loose my hair, and have skin rashes – which I was later diagnosed as having Raynaud’s.  Sure, pile it one.  With plaquenil I had to visit the ophthalmologist frequently to ensure that my eyes were ok.  Before that, I was on relafen (nabumetone) and indomethacin that made me loose quite a bit of weight.  Finally I was prescribed methotrexate and experienced even more hair loss (you would think I would be bald by now) and occasional bouts of migraine.  None of the medications worked and my condition worsened.

I gave up tennis as I couldn’t even walk right anymore.  Playing the piano was no longer an option for me – it always ended with me frustratingly banging on the keys as my fingers were no longer mine to move. Cooking quickly became a chore, instead of a joy.  Shopping became tedious and required a full day of bed rest after the fact.  I could no longer even lift a load of laundry.  Life was miserable and painful to say the least.  I went from 60 to 0 in 2 seconds.

New Outlook

What I had though, was plenty of support.  I decided I could no longer continue my dependency on mainstream medical professionals to find relief.  I started researching “alternative cures.”  My father stumbled upon a book, which for the life of me can’t recall the name of.  The book was really hard to find as it wasn’t widely circulated.

It basically says that you are what you eat.  In August of 2003, I started charting my eating, exercise (or lack-thereof) and pill-popping habits.  To cleanse the system – I went without food for a week, drinking only water and honey (it has been known to have healing qualities).

n.b.: the book called for just water for 2 weeks.  I didn’t think that was humanly possible.

Detoxification

Surprisingly, after drinking only water and honey for a week I were still standing, albeit 12 lbs lighter.  The following week, I started testing fruits.  A fruit a day for 7 days.  I tested what I ate often – watermelon, grapes, apple, oranges, banana, peaches and cantaloupe.  At the end of the week, I found out that my system abhorred and had an adverse reaction towards peaches.  I have since eliminated peaches and all stone fruits (apricot, nectarines and plums) from my diet.

Week three: vegetables/legumes/nuts.  I tried different veges, raw and cooked.  And at the end of it, I found my kryptonite that literally paralyzed me the next day.  That too has been banished.

Week four: meats.  I realized I couldn’t eat meat the entire day.  So I adjusted accordingly, and added “safe” veges and fruits.  Also, from my research and readings, I knew that too much meat (red meat) actually hurts the body.  I’m not much of a meat eater to begin with so that really wasn’t a problem.  On week four, I realized that salmon was like an elixir for me.

Week five: carbs.  Bread, rice, noodles – all my fav was finally back in my diet.

At the end of this “experiment” – my light bulb went off.  Food REALLY did hurt the body.  BUT it could also nourish it, if used in moderation. What’s more astounding during the 5 weeks of experiment was I were drug free and in lesser pain than before.

n.b.: Different people have different reaction to different foods. It’s a trial and error process.

The Change

Not only did my outlook on food and my health change, I started adding what little “exercise” I could do.  I did yoga, re-found tai chi and pilates.  The first two forms were too strenuous on my ankles and knees.  I guess I enjoy doing things on my back.  (haha!)  Instead of sticking to traditional medication, I sought alternative/chinese medicine too.  For 6 months, I saw a acupuncturist on a weekly basis and drank the most horrendous “herbs” known to mankind. I guess this just wasn’t my cup of tea.  Could not fault me for trying there – AND breaking the bank for this.

At that point, I could say that at least I had a grip on my life, even if it was just a little.  I no longer wallowed in self-pity and neither did I agonize in pain nor worry about sleepless nights.

The next good thing happened in 2004.  I changed doctors (as my health insurance changed) and this new rheumatologist literally saved me.  He prescribed me a disease modifying drug that essential stopped my immune system from attacking its own body.

On May 2004, I began my biweekly injections of enbrel. Within a few weeks, I quickly noticed the difference in the way my joints were able to move.  The drug stopped the further progression of the destruction of my joints.  The only joint that was permanently damaged was my left ankle.

Flip side – I had to stay healthy (what an irony) and keep away from sick people since my immune system was in jeopardy.

Today

Six years later, I’m still living with RA.  I have regained some dexterity in my left ankle.  My joints are as limber as it gets. However, my ANA antibodies are now negative (no signs of lupus anymore).  On the flip side, I have “acquired” two more new diseases – Raynauds and eczema.

My quarterly detoxification has helped me tremendously.  So has my “occasional” bouts of exercises.  If nothing else, I have found that the food that we eat does hurt our body more than it’s supposed to.  Food today has been bioengineered and processed in so many different ways that its cell structure has completely changed from what it originally is.  Which is why, consuming ONE group of food over another could do more harm than good.  Moderation is the key.

I am a much stronger, healthier and happier person than I were 9 years ago.  I know my limits.  I take the good days and the bad – because without the bad days, I never truly know what living pain free is.  I have learned not to take things for granted, but neither do I take things too seriously.

If you can think it, you can achieve it.  This is the power of positive thinking and following it through with positive actions.  Mind over matter.