M.O.B - 27th June

“Watch your thoughts, for they become words.
Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it becomes your destiny.

~ Upanishads

The death of 'I'

I have been trying so hard - and for so long - to stay strong. But I can't do it any more.

3 days ago I finally gave up my fight against allopathic medication and started Medrol, a Group A corticosteroid for the inflammation of the muscles and nerves. I no longer know why I put myself through the agony of the Lyrica & Cymbalta withdrawal symptoms, if I simply had to start on such strong medication again.

I feel defeated.

In fact, it's like there is no longer an 'I' left to either be strong or feel defeated. There is just pain and fatigue.

And I'll do just about anything to stop it.

At the very least I tried to stick to the hope that with the steroids, the pain would finally get a little bit better; that after 9 long years, my body would get a break from the agonizing misery....but it hasn't. And that may be the most disappointing thing of all.

The constant dizziness - I don't know whether it's the CFS/FM or the medication that's responsible - has been getting worse to the point where even lying in bed I feel the need to constantly hold onto something so I don't fall.

 I've never wanted to be that person who's always miserable and complaining. I always told myself that even if I can't help being miserable, I can at least not complain.

But since that 'I' no longer exists, I guess I can finally be weak and break down and cry...

Happy to be me

I'm finally off Cymbalta & Wellbutrin!

Can't believe I actually did it. The past couple of months have been amongst the worst ever. There were days - weeks even - when I felt like instead of bones and muscles and skin, all I was was a mass of unbelievable pain and a deep, never-ending, all-pervading fatigue. I didn't think I could go through the withdrawal.

But I did!

And I'm so proud of myself! :)

Now just 120mg Lyrica to go....

My new Haircut

Newsletter by Jenni (Chronic Babes)

Dear fellow ChronicBabes,
(view in your web browser)

Today I want to share with you a short, simple message: Be brave in the face of chronic illness. It’s easy to be overwhelmed by fear or sadness. It’s easy to get confused, or to feel swamped with questions about the unknown—or to be angry about having to live with something you didn’t plan for, or don’t want to face. These feelings can weigh you down, and can fester and turn into fear.

Fear can hold you back. Fear can stop you in your tracks. Fear can keep you from being the truly awesome Babe you are meant to be.

I know this because I’ve let fear stop me before. I can tell you this because I’ve been there myself—I’ve experienced times in my life when fear overwhelmed me and stopped me cold.

But every day, I recommit myself to stand up against my fears and to live an incredible life in spite of chronic illness. And today is really one of those days—a day when I am truly standing tall and meeting my fear face-to-face, looking it square in the eye, saying hello to it, and then walking right on by. Fear is not going to stop me from being an awesome ChronicBabe, no matter how sick I am. I am going to rock this life!

Maybe this fear-fighting idea is old news to you; in that case, let this simply be a gentle reminder from a good friend. On the other hand, maybe this is a fresh idea for you; in that case, I hope you’ll consider printing this email and carrying it in your pocket for a few days, re-reading it each time you feel fear tug at your sleeve. (This is a favorite trick of mine.)

Feel fear? Face it down. Don’t let it stop you. I believe in you! And if you want to talk about your favorite fear-busting techniques, come on over to the Forum and we can have a chat about it.  I’ve already started a list there of some of my favorite fear-fighting techniques and I think our Forum members will be posting lots more.

Thanks for sharing this moment with me, friends. Be AWAP… (As. Well. As. Possible.)

XO,



Editrix Jenni

The long and the short of it...

Since I've been a child, I've been fascinated by long hair....started growing my hair when I was 7 yrs old and never looked back. My hair was as much a part of me as an arm or a leg. that's why it was such a shock to everyone (including me) when I decided to cut it. 

A part of me was quite scared about letting go of my 'identity', my 'uniqueness'. What if I didn't look nice any more, what if people didn't recognize me, what if I rly regretted it?

Well, I made the leap around 6 months back and have never been happier. It's made my life so much easier - takes no time to wash or comb, am no longer constantly running out of conditioner, the chronic pain in my neck (due to the weight of the hair) has disappeared, and I love the way I look.

As one friend put it - "earlier, we only saw the hair, now we rly see you"....

Rapunzel, Rapunzel

The 1st cut

Getting ready for the 2nd cut

Short angled bob

The 3nd cut

The final cut

Have a hair cut apptment on the 25th...let's see what I go in for this time....

Of start-ups and hackers

So here's the deal - if you live in the Silicon valley, the start-up bug WILL catch you. It doesn't matter how much you hide, run, scream or fight it. It doesn't matter how risk-averse or certainty-oriented you think you are. It will find a way to sneak past your defenses, weasel it's way past your doubts and sink it's teeth into you good n proper! And that's what happened to me.


Hubby K has always been an entrepreneur at heart. Since I've known him, all he's wanted is to start his own company. All these years he's had to keep this ambition on a back-burner as he was too busy taking care of me. But, we've decided that the time has finally come. He's quitting his job, we've moved to San Francisco proper and we're starting our own start-up. This is it, folks!


In an effort to educate myself about the strange but exciting world of start-ups I decided to start reading up about it. Did you know that not only do techie-geeks live in their own peculiar universe of networks and virtual reality, but they have their own language too - hackers, angels, runways, cookies....and none of them mean what they would in simple English.

To quote security guru Bruce Schneier,  "A hacker is someone who thinks outside the box. It's someone who discards conventional wisdom, and does something else instead. It's someone who looks at the edge and wonders what's beyond...A hacker is someone who experiments with the limitations of systems for intellectual curiosity."


In short, being a hacker is a good thing.


Oooookkkkaaaayyyyyy.  

Paul Graham of YCombinator, one of the biggest angel investors of start-ups, explains how they choose who to fund. They fund hackers. Here are their criteria: determination, flexibility, imagination, naughtiness and friendship.


And here's why I think hubby is born to be a hacker: these are exactly the qualities needed to successfully deal with living as a full-time care-taker of a patient for 8 long years. Never giving up - no matter what the odds, changing/improvising plans routinely, dreaming up new ways to make things possible... 


Currently we're in the process of applying for funding for our new start-up. I have a hundred examples of why K would be the perfect entrepreneur / hacker to back....just hope the investors see it as clearly as I do.

Image Credit: Labnol

M.O.B. - 18th March

Just realized that we haven't had our 'Moment of Beauty' post in aaaaaaaaaaaaaaaaaaages, so here's a quote that made me feel positive....

"Change the way you look at things, and the things you look at will change"
- Dr. Wayne Dyer

Opulent Temple white party

This weekend was a bit of a bummer.

We were supposed to go for this Sacred Dance 'white party' - don't worry if you don't have the foggiest what that means, I don't either - but it sounded particularly conducive to a night of divine dancing and drunken debauchery. But, alas, this was not meant to be...

I was having a pretty bad day, but since when have I decided to listen to my body's signals? Managed to get ready, sit in the car, almost reach the venue, then realized that I had forgotten my ID at home. Turned back, reached the house, picked up the ID...and just didn't feel well enough to go out again!

Dark cloud: was quite disappointed, esp since we had bought tkts in advance and had been looking fwd to an evening out.

Silver lining: got to get all dressed up in white, with glittering silvery make-up, take pics and feel pretty. And don't ever underestimate the value of feeling pretty!!

Ups n downs

Life is full of ups and downs, they say.

2010 was mostly a down for me - extreme exhaustion, excruciating pain, mind fog, hospitalization, you name it. But that doesn't mean there were no ups. I think I had to reach absolute rock bottom to get out of the 'comfortable' place I had settled into. I had gotten so used to feeling tired and in pain all the time, that it had become 'normal'. But maybe getting worse was the push I needed.

I had been trying to reduce my meds for a while. By end 2009 I had managed to cut out many of the most hated meds - chief amongst them Cymbalta. Cymbalta is approved for dual use against depression and fibromyalgia. But what no one really emphasizes are the side effects. The frequency and severity of side effects listed by the company come nowhere near the real thing. The 'brain fog' caused by Cymbalta got so bad that on some days 2+2 was a confusing equation for me!

Towards end March 2010, my pain had shot up to an unmanageable degree. I was taking 6 to 8 Vicodins daily along with medical marijuana in edible form (extremely potent) as well as some other pain killers. 

And still the pain wouldn't go. 

I pretty much lived like a zombie for those months - either drugged out of my mind or in unbearable pain. We hadn't gone out in months and K was mostly focusing on managing my pain, besides his job and the home. 

Finally came a day when I felt I just couldn't go on like this any more. I no longer felt safe with myself. At this point, K and I went to the emergency room and decided to check me in. 

The doctors at Stanford Hospital, nice as they were, were pretty clueless. They started me on Lyrica as it's the only other drug approved for Fibromyalgia. It wasn't particularly effective, so they kept upping the dosage till we reached 400mg/day (100mg more than FDA approved 'safe' dosage). Eventually, they added 60 mg of cymbalta and sent me home with more drugs and little relief.

One of the particularly nasty side effects of Lyrica was that entire episode of events would vanish from my memory. On one of my better days, we went to the mall for some much needed retail therapy and I bought a couple of nice skirts. The next day I had absolutely no recollection of the trip or of my purchases. 

Days passed in a daze. And yet, there was no relief from pain or any signs of recovery. 

The doctors had no answers as to when/how to get off these drugs, but would usually give a referral to a different clinic. We did make few trips to the Stanford pain clinic but soon realized it was just more of the same. They referred us to 3 other clinics and usually the referrals never went through or required multiple calls, and we had to wait for weeks while the hospital figured out the insurance details.

Initially I was mad at the doctors for not doing something different, for not giving me a long term solution, for not trying harder to help me. The side effects of the drugs (confusion, brain fog, memory loss, dizziness etc) were probably worse than the illness itself. My mother had to fly down from India to help care for me since there was no way hubby K could manage everything by himself - either physically or emotionally.

Around mid-2010 I finally decided to try something different. 

The roller coaster of pain had been tough emotionally, so I went to the best therapist/psychiatrist I could find - Dr. Matt May. He wasn't covered by our insurance and I was worried about the cost, but I don't think we could have made a better investment. Years of brain fog had pretty much warped my self image. Dr. May helped me appreciate myself again. And with his help, down we went on the meds again.

At the same time, K had read an article about how a chiropractor had cured someone of severe chronic pain. We decided to give chiropractic a try. Dr. Matt Coleman was like an angel from the heavens above :) Within a month my pain was down from the acute sharp shooting pain to a much lower-grade dull ache. I was able to cut vicodin to a large degree but not completely. More importantly, he taught me the importance of nutrition. We all try to eat right - at least we like to think we do - but it's shocking how little we actually know about what goes into our mouths. Best advice I can give you - read Nourishing Traditions by Sally Fallon. I can honestly say this book changed my life. I gave up sugar, tea, coffee, started checking the ingredients of everything that went into my tummy, eating only organic etc etc. He helped my figure out that I was severely allergic to corn and tomatoes.

Within a few months I started feeling stronger from inside. It was like my organs were recovering from all the stress they had been under with the strong medication and wrong foods. I lost weight (over 40 lbs) looked better and felt better than ever. K also lost about the same amount of weight just eating right with me. 

I'm not trying to suggest that I was miraculously cured, but it was definitely a start. By September I was feeling strong enough to travel and decided to go to India to try acupuncture again. Unfortunately acupuncture wasn't able to help - despite daily sessions for about 3 months. But then I tried something new - the Kottakal Arya Vaidya Sala - an ayurvedic hospital in India. It was two weeks of in-patient treatment and daily massages with medicated oils. I came back feeling and looking like a different person. 

I'm now back in San Francisco along with my ayurvedic meds from the Vaidya Sala, and am on the roller coaster of getting off my allopathic meds again. I'm doing pretty well - Cymbalta is down from 60mg to 10mg, Lyrica from 400mg to 150mg and Wellbutrin from 300mg to 75mg. But the withdrawal is pretty tough. I'm hoping to be totally allopathic medicine free by August 2011. 

Keep your fingers crossed for me!