Fibro Warrior – Sheana Ochoa

Our Fibro Warrior of the week is mom and wife, Sheana Ochoa, of Los Angeles, CA. She was diagnosed with Fibromyalgia in 2005 after five years of symptoms.

Tell us a little about yourself:
Before I knew how devastating FM/ME was, I got baby fever. I didn’t even believe such a thing existed. You know, the biological clock, but here I was this independent woman working a “day job” as a high school teacher, while writing my first book. Then out of the blue, I had to have a baby!

Before the baby fever struck, FM/ME had already compromised my job and health quite a bit. I caught every flu and cold that came into my classroom. By the third year of teaching I barely got through each day. Sometimes I had to leave work early. When the semester ended, I’d have 6 weeks to recuperate until the next semester. It was a vicious cycle. I basically lived to work, because once I came home, I’d fall into bed, only to do it again the next day. But by my fifth year of teaching, I would only last about two months into the school year before my body just stopped. I’d become bedridden with the most agonizing pain, as if my flesh were being torn from my bones. I knew I had to quit my job to regain my health.

I applied for disability, knowing that whether or not I got it, I didn’t have the strength to keep teaching. Day job? What was I thinking? Teaching has to be one of the toughest jobs in the world. After I recuperated from my last year of teaching, I traveled to Vietnam. It was when I saw these white Westerners strolling their adorable Vietnamese adoptees that the seed to have a child was planted. I reasoned that if I didn’t have to work, I could manage the illness and have a baby. After a grueling and humiliating ordeal with the school district, I was granted disability. I gave myself a year without work to see if I could go flare-free. I did! There was no man in my life and the clock was ticking (I was 37), so I knocked myself up via anonymous sperm donor, which you can read more about here.

Noah as a baby

I was in seventh heaven all during my pregnancy, planning my life as a single mom and writer. But, after I had my son I realized the full debilitation of FM/ME. My illness has progressed. For example, I didn’t experience cognition difficulties, or “fibro fog,” until ten years into the illness (only three years ago). Also, in the early stages, I didn’t’ have to nap everyday just to get through the day. Now, in the middle of the day I literally become too ill to stand up and the fatigue rolls in like an ugly hangover. I sleep for two or three hours. Then I awake with the energy to get through the rest of the day. It’s like getting two days in one! If I hadn’t had my son when I did, I would not have been well enough to have him at a later date. He’s a miracle. They say fibromyalgia isn’t degenerative, but that hasn’t been my experience, which is why over the past year I’ve been questioning my diagnosis.

As for my love life: When my son was a year old, I met my husband. We just had our fourth anniversary.

When were you diagnosed? How old were you at the time?
I was diagnosed in 2005. I had been experiencing symptoms already for five years, like aches and pains that would come and go and horrible gastrointestinal distress.

What lead up to your diagnosis?
During my first year of teaching, I caught every cold and flu that entered my classroom. I was exhausted the entire year. I talked to other teachers and they said the first year is the worst so I chalked it up to that, but I was very ill all the time with everything from strep throat to unexplainable vertigo. I’d estimate my first inkling that something was wrong with me came when I was 29 years old. While driving, when I lifted my leg from the gas to press on the brake, I experienced pain in my right thigh. Now I have it in both legs and it’s more pronounced. I have to physically lift my leg with my hands if I want to cross my right leg over my left while sitting.

That muscle weakness is where it becomes confusing to distinguish between FM and ME, and I haven’t ruled out Lyme. When I was diagnosed with FM, the rheumatologist identified enough tender points to meet the FM criteria. This month, a new rheumatologist found no tender points. Zero. I have them, but not in any of the “classic” sites. Of course my primary doctor had already ruled out illnesses that would mimic my symptoms through blood tests such as AIDS or cancer, but I’d never had an MRI to check for MS or other illnesses because I believed I had Fibromyalgia and specifically concentrated on treatments for FM. Now that my illness is degenerating, I wonder if I also have other illnesses along with the FM.

As my fatigue progressed, my primary doctor diagnosed me with CFS. Well I had chronic fatigue so I didn’t question it, but I didn’t understand what CFS was. I didn’t realize it was different from FM until I began reading about Myalgic Encephalomyelitis, which is what people abroad call CFS, and which is a name that properly describes the illness. Recently I learned that CFS and ME are completely different illnesses. ME is a neurological illness that is easily identifiable and has distinct features, while CFS is diagnosed by excluding all other diseases and therefore cannot be defined as a disease at all. Sound familiar? Except for the tender points, Fibro is diagnosed by excluding other conditions too.

I spent the first six years feverishly looking for a cure, trying everything, and feeling disappointed over and over again. During the first two years after my son was born, I was bedridden. I had to leave my home and friends and move to a small mountain town where my mother lives and where I tried to recuperate in her upstairs bedroom, an invalid, deprived of motherhood, unable to even answer my newborn’s needs. I had lost everything: my home, my work, friends, and now motherhood. So I began a drastic protocol that promised to reverse the FM within a certain time: two months for every year I had been sick. I calculated it would take 18 months before I got my life back. Two years later, I recovered from the flare, but I was far from “cured.” I vowed to stop trying to fix myself and just try to manage the illness.

Six months ago, however, I broke that vow when I decided to write a memoir in order to help others with debilitating invisible illnesses. That’s when I learned what “CFS” is, which was frightening because it left me wondering if I have ME, which I have yet to verify. There have been great strides in research lately, of which I’m trying to catch up on,  but I’m not holding my breath.

What was your life like before you got sick? 
Before I got sick, I was an over-achieving, straight-A-28-year-old, graduate student finishing up my masters, while teaching undergraduate Spanish courses and working a full-time job running an acting school. I worked hard and partied harder. It was my prime. I’m lucky to have had most of my twenties.

Noah at 6

How did your family initially handle your illness?
They didn’t get it. No one gets it but my mom. And I’m grateful to have one person who really understands what I go through. She knows that one minute I can be walking at a normal clip, and the next unable to rise from the floor. Doctors had told me to educate my family, but the only time we’re all together is during the holidays. So, one Christmas we all went to Hawaii and it was probably Christmas Eve so not the greatest timing, but I asked everyone to come watch a video on Fibromyalgia. Some of them felt it “inappropriate.” My feelings were hurt. I thought if any of them were sick, I’d want to know about it. But that’s the tragedy of invisible illness. It’s difficult to fathom.

What do you feel is the most challenging aspect of Fibro?
I used to think the most challenging aspect was the unpredictability of this illness – not being able to plan a day, let alone a life. But now, what I grapple with most is continuing to believe that one day I will be “back to normal.” Part of me thinks I have to believe this, and like I said I used to never doubt it. But as I get older I wonder. I know this isn’t healthy. It’s living in the future instead of the here and now, but without that hope I think I would have become depressed over this illness a long time ago.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have major depressive disorder, and thanks to Prozac I’ve been symptom-free for the last 15 years. I also have Premenstrual Dysphoric Disorder PMDD, which is like PMS on steroids. I’ve made some pretty bad choices in my life under the influence of PMDD. I have chronic IBS, aggravated since pregnancy by a constant burning pain below the sternum that feels as if a rabid animal is chewing on my insides. I also have arthritis, degenerative disc disease and myofascial pain syndrome.

What (if anything) have you found/ done that has improved your symptoms?
“Yoga!” she says accompanied by angels hailing “Ahhh.” Even if I can only do lying-down or sitting poses. Just breathing and stretching the tiniest bit helps the pain and my state of mind.

How open are you with friends & family about your illness & symptoms?
I tell everyone I have to deal with – from a neighbor to my kid’s teacher — about the FM. I want them to understand that I’m not a flake. That I really thought I could come in one day a week to my son’s classroom. Or to explain why they can’t get a hold of me since I’m basically in bed half my life. When I take what I call my “enforced” daily nap, I turn my phone off and usually forget to turn it back on.

Do you blog about your illness? If so, what inspired you to do so?
I just launched a blog called Chronic Warriors to write about my journey with chronic illness, but more importantly to look at issues our community faces such as coping, accepting, researching a “cure,” passing, not passing, stigma, management and so on. I really hope it becomes a space where people will interact and share their journey with me.

I’m a writer by profession so the inspiration came from the belief that writing in-depth about my experience will be one road to healing.

What is the best advice you’ve received about Fibromyalgia?
The best advice for anyone with chronic illness is to know that it does not define you. What you do or can’t do does not define you. Who you are is much greater than that.

What is your favorite way to cope with your life as a spoonie?
The best way of coping is to stay grateful, and that’s not just for spoonies, but for all of us with the human condition. Where there is gratitude, there’s no room for unhappiness.

What is it that inspires you to keep going, despite your illness?
I used to think it was my writing, but as I become more sick more often, I realize that dream of being “the great American author” probably won’t happen for me now. So, now, my dedication to raising my son to be a responsible, compassionate human being keeps me going. But this answer is colored by the fact that I’m in a flare right now. Once I start writing again, the memoir and the thought that I may help others through writing, will give purpose to my life.

Have you been published?
Yes, I’ve been published in various magazines/journals including in Salon, CNN.com, Film International, and my first book was published last year. It’s the first biography of Stella Adler, an American treasure that never got her due credit. She pioneered modern-day acting as we know it. And we know that through film, lives can be transformed. It’s our most ubiquitous and therefore powerful art form, which makes it the most powerful (for good or not). Her life spanned the entire 20th century so I got to research all the cultural-political events as a backdrop to her story. And she was very active politically, especially during WWII when she ran guns for a covert Jewish organization to help displaced persons get to Palestine after the war. She was Brando’s teacher.

What is one thing you’ve learned about yourself since your diagnosis?
I’m too high-strung to be sick. I wish I were more laid back, didn’t let what my husband calls my “monkey brain” control me so much.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
You know more about your body than your doctor. You are a patient, but that doesn’t mean you don’t have knowledge and power. When you want something, don’t ask for it. Tell your doctor to order this or that test, or referral, or whatever you need and explain why. Simply say, “I’d appreciate it if you would do such and such.” Don’t be intimidated by someone whose job is to be of service to you.

Now that you’ve gotten to know Sheana be sure to check out her blog. You can also connect with her on Twitter and Facebook.

If you enjoyed this interview be sure to check out the other Fibro Warrior interviews. And, please contact me if you’d like to share your story.

Honeymoon Kiss