Simla’s Story :: Part 2 :: Anger & Bewilderment

Author’s note: This is the second installment in a series of articles about how I have healed from several health conditions and come to live very well with my autoimmune conditions, which are in full remission as long as I respect my triggers. The specific autoimmune conditions I will be writing about are:  fibromyalgia; undifferentiated connective tissue disorder; and, immunotoxicity. The other health conditions I will refer to in this context are:  chronic fatigue syndrome; adrenal fatigue; asthma; chronic bronchitis; pneumonia; food and environmental allergies; chronic bronchitis; multiple chemical sensitivity; lyme disease (also referred to as lyme’s disease); medication-induced hepatitis and pancreatitis; IBS; digestive issues; leaky gut; dysbiosis; candida; heavy metal toxicity, and others. While it’s personally difficult to relive a lot of this through the act of writing, I hope to provide the information and inspiration I wish I had while I was going through this life-altering experience. I write from the perspectives of a patient, a busy professional, an entrepreneur, a wife, a daughter, and as a certified health coach and nutrition expert, which is what my experience has led me to become. I’d love to hear from you if this proves helpful to you – you can email me at hello(at)enjoydelicioushealth.com. You may also visit www.enjoydelicioushealth.com or www.delicioushealthblog.com to learn more. In health ~ Simla Somturk WIckless, MBA, CHC, NE.

Part II:  Anger & Bewilderment

Mid-August 2006 ~ Late December 2006

As my pain continued to spread and intensify, I realized I needed to stop denying what was happening and make time to figure out what was going on. I had been working very long days despite my immobility and other than going to an urgent care clinic and a podiatrist/sports medicine expert, and a prosthetics specialist for leg brace (which didn’t help at all), I hadn’t made the time to seek out answers for what was going on with my body. The shooting pain, numbness, and aching had spread to my right arm, so typing hurt. My stress levels were unsustainably high. Keeping up with the equivalent to two or three peoples’ workload, organizing our wedding all by myself, living in constant pain while trying to ignore it… I was exhausted. It was all I could do to take things one day at a time and fight the ubiquitous feelings of overwhelm and anxiety.

Since my workload was relentless, I realized the only way to do figure out what this pain was all about was to ask for some time off. I requested a medical leave of absence. It took a few weeks, but I finally got it. Great, I thought. Now what?

I didn’t know where to begin. I didn’t have a doctor that really knew the whole story. Sure, I’d seen a bunch of specialists over the years – a pulmonologist for my severe asthma, my dentist, eye doctor, a few emergency room visits because of strange symptoms with untraceable causes such as overnight fevers. And I had a primary care doctor, one whom I never seemed to actually see when I needed her – I got rerouted to a nurse each time I went in. They rushed me in and out (my usual visits were less than 10 minutes each), were quite rude, never got the full story, and – as western medicine tends to do – seemed to believe the solution was to quench symptoms rather than seek and address the root cause. I felt uncomfortable there and chose not to seek medical counsel with them. It always seemed odd to me that they – well, really, the nurse, since I never actually saw “my” doctor – was always tired-looking and sick, sniffling and coughing herself.

I ended up calling the one doctor that I felt knew my medical history best. The problem was, she lived across the country. After communicating via two voicemails, the best she could do was give me the name of a doctor in San Francisco. I had a name, at least. I made an appointment several weeks out, as he had quite a waitlist.

In the meantime, we got married. It was a chilly but beautiful day. Small, intimate, with people we loved, vows exchanged with the help of a dear friend who had gotten ordained for the day. I had to wear flip-flops because shoes hurt too much, and I had my mom in one arm and my dad in the other when going down the aisle to keep me from limping. The other bummer was that I couldn’t dance like I wanted to. Thankfully, all that got trumped by the joy of that day. I was happy. Later, I joked that my now-husband had married a lemon.

So the time came and I went to my appointment. He was a Lyme Disease specialist. I got diagnosed with Lyme Disease, along with a couple of co-infections. In hindsight, not surprising, given his specialization and natural bias. At the time, quite a shock. A tiny tick?? That’s what did this to me? Never mind that I didn’t remember any signs of a tick or tick bite (granted, sometimes they’re too small to see, but as someone who gets a huge lump even with mosquito bites, you’d think I would’ve noticed a rash or something.)

I exhibited many of the symptoms associated with Lyme Disease, and some of my lab tests came up positive. I turned down the nerve and pain medications but accepted the antibiotics and another medication called Mepron – a nasty-tasting, bright yellow liquid, often used to ward off pneumonia in HIV+ patients and found to be effective against Babesiosis, one of my stated co-infections.

I kept a running list of symptoms because they kept shifting or emerging weekly. This was my attempt at analyzing trends, identifying triggers, keeping tabs on my (lack of) positive progress. I abandoned the list after 8 pages; it was too depressing and rather than being helpful, it was demoralizing. I tried to participate in several online communities, to seek and offer information, but was so turned off by the pervasive negativity in the forums I found that I soon crossed that option off my list. I needed positive, not make-me-weep-from-woe negative.

By November 2006, some of my symptoms were:

• legs swelling up so much that I couldn’t bend my ankles or knees enough to walk
• losing my balance and bumping into walls or tripping over myself
• loss of short-term memory; brain fog
• increasing sensitivity to odors and chemicals, to where I could barely be around light traffic because of car exhaust, or use perfumed hand soaps or shampoo
• inability to handle multi-tasking or too many sensory experiences at once: I once burst out crying when I was trying to type an email and the phone rang
• increasing levels of fatigue and inability to bounce back, no matter how much I slept

… and there were many others.

I was angry, to say the least. I was also terrified, but mostly angry. This wasn’t supposed to be happening. I was 32. It made no sense. But rather than think Why me? I kept thinking, Seriously? Really? and feeling livid that my body could let me down like this, in a way that was inconvenient, incredibly painful and “invisible” to others. Friends didn’t understand exactly why I had to turn down invitations to have a pre-wedding girls’ getaway, drivers and other pedestrians were visibly impatient as I shuffled across the street doing my best to make the green light but not succeeding, taxi drivers grumbled at me when I had to ask them to drive me the 4 blocks left to get home because I couldn’t walk any further. And rather than explain, it was easier for me to begin isolating myself.

The funniest-in-hindsight part was that I got great counsel from my uncle, who is an equestrian expert and works in the realm of horse racing, as prize race horses are vulnerable to Lyme Disease and its co-infections as well. I was comparing my meds and treatment with those of horses, because the information I dug up on Lyme Disease was all over the place. Lyme tests are notoriously unreliable. It’s still not well understood, doesn’t always respond well to therapy, and there are many risks associated with – and much debate around – intense medical treatment protocols.

In my case, after about three months of the heavy duty meds, I woke up yellow. Color of a ripe banana all over, including my eyes. My teeth looked super white in contrast – a nice benefit any other time (free teeth “whitening”, anyone?). We called my doctor but he was off for Christmas week. Our question of the day was:  ”Do I keep taking the meds or go off of them because I clearly have liver issues?” After several emergency calls, we finally got a hold of his designated backup, who had no idea what to recommend. Then we called Andy’s dad, an oral surgeon, who gave us some common sense advice. Off the meds and off to the emergency room.

There were signs leading up to the banana situation although I didn’t recognize them at the time. (Ahhh, hindsight. There you are again!) A few days prior, my skin had begun itching with no visible signs of anything going on, lasting all day, getting worse in the middle of the night, preventing sleep. And for some weeks, my entire ribcage had felt like a vice, tight and painful when breathing and super tender to the touch.

The ER doctor diagnosed me with hepatitis and pancreatitis – basically, inflammation of the liver and the pancreas. An ultrasound showed lots of gallstones. There was no blockage from the stones, which could’ve explained the hepatitis at least, so a natural deduction was that the inflammation was medication-induced. And nobody had informed me that the medications I was on could generate gallstones. I had to find that out by myself. The ER doctor said I reacted like someone would to narcotics when they gave me IV Benadryl, the relief from itching was so great. It also did a great job of knocking me out. After several days of little sleep, I could finally sleep deeply.

My whole life, I’d been used to bargaining and thinking my way out of problems:  I’m smart. If I do X, I can solve Y. I thought my plan up until the itchy banana situation was working – at least I had appointments, standing diagnoses – labels I could latch on to, to define what was happening to me, along with research findings – I was doing something about it. But that was proving to no longer be enough. Just when I thought things couldn’t get any worse, I began realizing this was just the beginning. And I couldn’t think myself out of it.

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In Hindsight:  What I Have Learned

• If you have a full-time job and you’re going to have more than 25 people at your wedding, hire a wedding planner! It’s not worth the added stress in your life. I’m serious. Same thing applies to any other task in your life that eats away at you. Cut back on other things that eat up your budget and outsource this one thing if you have to. It’s just not worth the stress.
• Recognize that everybody has a bias, despite the best intentions. I do, you do, everybody does. It’s inevitable, shaped by life experiences, personality, values and beliefs, training, upbringing, and probably lots of other stuff. Get opinions, but treat each source with a grain of salt. If it doesn’t feel right for you, it probably isn’t.
• YOU know your body best. Not your doctor. Not your mother. YOU. Trust that and make your own decisions about your body.
• Learn to listen to and interpret the signals your body is sending you before it’s too late, before it has to scream at you to get your attention, as did mine.
• Lyme Disease and other conditions that tend to affect several systems in the body are often confused with autoimmune conditions and vice-versa.
• Because they’re not well understood by many – perhaps the majority – of allopathic (western) doctors, chronic, systemic health issues (conditions that tend to affect multiple systems in your body) such as Lyme Disease, chronic fatigue, or fibromyalgia are still frequently dismissed as “being in your head,” or you may be told to “try harder to shake it off”. These are unfortunate, ill-informed opinions. Don’t let them get you down. Just say, “thanks but no thanks” and move on to a doctor or health practitioner that is more appropriately educated/trained, compassionate, makes you feel heard, and who is willing to admit to not knowing something rather than make incorrect statements.
• Chronic stress is insidious and it rather invisibly chips away at your immune system over time up until a point when your body tends to reach a breaking point. For more and more people, especially those who are genetically predisposed, this means the onset of an autoimmune problem. For others, perhaps cancer. Learn to identify and address sources of chronic stress in your life. If you seem to catch every bug that goes around, or keep coughing for months after contracting a chest cold, for example, know that your immune system is already compromised.

To Be Continued the Week of 1/4/10:  Simla’s Story :: Part III :: The Valley of Despair & A Love Affair with Food Begins

Missed Part I? You can read it here.

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© 2009-2010 Delicious Health, Inc.

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“Authored by Simla Somturk Wickless, MBA, CHC, NE, an integrative health, nutrition, and lifestyle coach whose mission is to transform busy bodies into healthy, balanced beings (TM). To learn how to zing your energy, tame your stress, and take back control of your health, register for her free monthly eZine at www.enjoydelicioushealth.com or read more on her blog at www.delicioushealthblog.com.”