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

by Simla on January 2, 2010

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:

… 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


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.”

{ 8 comments… read them below or add one }

Plucky March 2, 2010 at 12:51 pm

I am feeling so validated! I am so sorry you went through this! I am so glad you are sharing your knowledge and story with us. If I could only save my overstressed friends before they get sick… I’ll just lead by example.

Simla March 2, 2010 at 1:21 pm

@Kate @Plucky Thanks for your notes! You’re so very welcome. It’s not always easy to (revisit it all again now) but I’m so happy to hear that it’s given you more info / encouragement / validation… hopefully going to be writing more soon!

Sandra Lee March 21, 2010 at 3:49 pm

Thanks so much for sharing your story. It’s a great encouragement. I would love to read Part III but haven’t been able to find it yet! :-)

Simla March 22, 2010 at 7:43 am

@Sandra You’re very welcome! Thanks for your note. It’s sometimes unnerving to post something, knowing it’s out in cyberspace. I love hearing real comments from real people, like you.

That makes both of us – I would love to WRITE Part III but haven’t quite been able to keep up with the schedule I had initially set for myself. I will certainly keep writing. You may want to subscribe to the blog just to get the notice when it’s up. It takes time and recollection when writing, which is also an emotional process for me, so I find I can’t do it during an otherwise busy week, but I’m trying to find that next opening that will help me write it best…

Happy health & healing to you!
Simla

Lisa November 20, 2010 at 12:43 am

Talk about angry. I was and am still pissed. Mainly cause all the doctors saw how depressed I was. For much of my life, I’ve had this invisible illness and it was always dealt with as depression, mental illnesss. For the last 3 years I dealt with it myself, and I don’t have a significant others. Since June the pain and debilitation was so bad that I brought my sister and dad, into the picture. Bad idea!. They want to commit me to a residential treatment facility. Really pain clouds everthing and it is hard to stay positive.

I’m still here though after several times in the psych ward cause my pain was unbearable and I couldn’t handle it emotionally. I know my spirit is aching to fly and be free. One day at a time-

Thanks for talking about trigger cause I’ve think that my condition has gotten worse cause my triggers are all up and they overwelhm me emotionally, which just makes it worse.

Well I’m going to Maui to reconnect with self and mother nature. Simla, I’ll be in touch when I get back.

Lisa

Simla November 20, 2010 at 12:51 am

Anger is sometimes a great instigator to take matters more into your own hands, isn’t it?are =) Feeling your strength, Lisa. Hang in there. Enjoy your trip and Happy Thanksgiving!

Simla

Nikki August 19, 2011 at 4:38 pm

Please find a way to finish the third part. Really enjoyed youstory. Though unfortunate, I can relate a lot to it. Thank you for sharing it.

Simla August 23, 2011 at 4:43 am

Hi Nikki! You’re welcome. Thanks for the reminder and encouragement. I will make a note to come back and complete this story. I hope to share it live as well, soon, so stay tuned.

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