October 30, 2012

Day 30: My Story

In February 2007, I had my appendix out.  And while I’d like to tell you that was the easy part of my story…there really is no easy part.

See, I have always had cold feet.  No, not like I was scared to walk down the aisle and marry Grant cold feet.  But, feet so cold I always have to have socks on.  Well, in November 2006, I was a sophomore at the University of California, Davis, studying in the common room of my apartment with my cozy socks on.  My phone rang in my bedroom and I went running in to pick it up before my phone sent it to voicemail…there was a fraternity party and we were making plans for that evening.  And while I share the next part of this story quite freely when I’m telling it in person…I’ve never shared this in writing before…I slipped on the tile that covered the floor of our common room right as I got to my door (our bedrooms were all carpeted) and slammed my right side (right above my right hip) into my round doorknob.  It hurt so much.  I’ve never felt pain like that before.  A nasty bruise formed instantly and lasted for weeks.  But other than a really embarrassing story, I never really thought much about this incident again.

Fast forward to the first Monday in January 2007 and I was on the phone with my mom practically in tears because of the pain I was having on my right side.  It took them six more weeks to figure out I needed my appendix out.  They went through a whole series of other diagnoses, but it wasn’t until I was curled up in a ball in the ER that they finally did a CT to note that my appendix should probably come out.  I didn’t have appendicitis; my appendix has just stopped working.  The organ had died and hardened.  I think it’s from when I slammed my side into the doorknob, but that’s never been medically confirmed.

After surgery I developed an allergic reaction to the antibiotic (Mefoxin) they gave me prior to surgery.  I had hives all over my body.  Additionally, my grandfather and I share an allergy to adhesive tape.  This allergy caused the incision site to become extremely irritated and looked infected.  That spring (2007) I tested positive for mono.   That spring and summer I began to feel very sick after eating.  It started with terrible headaches and moved into gastrointestinal symptoms.  For the next two years I was sick off and on.  I have tested positive for the antibodies of mono three times and my levels were high enough that the doctors considered the virus to be active all three times. (Although most doctors swear you can only actually have mono once.  This was not the case with me.)  I saw specialist after specialist to rule out every autoimmune disease they could think of.  Each time I had blood work done, the results would always come back dead center of normal.  Each doctor I saw settled on a diagnosis of Chronic Fatigue Syndrome.  And although I truly believe that Chronic Fatigue Syndrome is a real and debilitating illness, something inside of me told me to keep searching.

In the midst of all of these issues, I was still continuing to feel sick after eating.  Not all of the time, but enough of the time to cause concern.  My doctors suggested it could be part of Chronic Fatigue Syndrome but I didn’t agree.  I started keeping a food journal.  Each time I didn’t feel well after eating, I would write down the food I ate and the symptoms I had.  I realized that each time I ate garlic, I felt incredibly sick.  After hearing multiple people tell me I COULD NOT POSSIBLY be allergic to garlic, I found my amazing allergist.  And he said of course you could be allergic to garlic.  After a simple skin test, we discovered that I am severely allergic to garlic and need to not eat any alliums.  And that I have a bunch of food intolerances as well.  I thought all my health issues would go away now that we knew what the deal with my food allergies was, but I still struggled over the years with feeling sick and fatigued.

I've seen more doctors than I can count, and provided more vials of blood than most people do in a lifetime. I've seen specialists and even a holistic healer, tried various medications, and spent countless hours on wikipedia trying to diagnose myself when all my doctors could not figure it out. The diagnosis they all seemed to settle on was Chronic Fatigue Syndrome. A very real, and debilitating disease. However, I've always felt like a piece was missing.

Fast forward to June 2010…I went out for sushi with this cute, athletic guy I knew from high school and after a few short weeks, he had moved across the country for Army training at Fort Benning, GA.  Suddenly, I was on planes every few weeks taking red eyes and xanax to spend as much time with him as possible.  Towards the end of April/May 2011, I was starting to have more a more difficult time with take offs and landings, and I would end up spending most of the weekend sick at his apartment.  When I would get back to California, I would have a very hard time standing up to teach (the transition from sitting to standing was especially difficult.  On more than one occasion I thought I was going to pass out in front of my students.)  Looking back on that time, my mom and I think all the flying and traveling is what kicked my POTS into high gear.

In June 2011, I packed up all my belongings, left my dream job, and all my family and friends to move to Clarksville, TN to be with Grant.  I was settling into our new home, making new friends, starting a brand new job, and planning a California Christmas wedding from the other side of the country.  By August I felt so sick I was barely making it through the teaching day.  Mom flew out and my gastroenterologist did a colonoscopy to rule out Celiacs disease or Crohns disease.  The results were completely normal and I went back to teaching.  The Friday before Labor Day Weekend I was so sick that I had to leave work early. Grant and I had plans to go out of town that weekend to see his extended family, so after a quick nap and a lot of peppermint tea, we hit the road.  I was exhausted most of the weekend but managed to make it through.  I felt so sick that we ended up driving home Sunday night instead of Monday so that I could have an extra day to rest before going back to work.  Monday we went grocery shopping at Wal-Mart and that is where I had the worst POTS episode (although we didn't know what was happening at the time) I have every experienced.  We were in the check out line and everything started to spin and go black.  We got me seated, and Grant got me some water, I still felt clammy and ended up throwing up. (Don’t worry, I was terrified of ending up on peopleofwalmart.com for weeks, but thankfully no one caught it on camera!)

My primary care doctor here was useless but she referred me to the Vanderbilt Integrative Health Center.  For the next six weeks they went off the theory I had Chronic Fatigue Syndrome.  They offered dietary suggestions, had me see their health psychiatrist, and sent me to pool therapy.  None of it changed anything, and most days were spent in bed or on the sofa.

But after years, YEARS, of waiting, one chance phone call changed everything.

I was supposed to be flying home from California and was incredibly sick.  My lame doctors in Clarksville weren’t doing anything (big surprise!) and I was able to get a hold of Blaire, my contact at the Vanderbilt Integrative Health Center.  She patiently listened to my symptoms and said, “Have you ever heard of POTS, because that sounds like exactly what you have.  Why don’t you look it up and come in for an appointment with our director when you’re back from your trip.”  All it took was one phone conversation for four years of searching for a diagnosis to end.  When I called my primary care doctor to discuss it, the receptionist thought I was calling to ask for a marijuana test for myself. As with any new suggestion from the doctor, I had to google it. I didn't even know what POTS stood for. Thanks to wikipedia, I now know that POTS stands for Postural Orthostatic Tachycardia Syndrome.

A month later I was meeting with my cardiologist and he was ordering a tilt table test.  I’ve written about it here, here, and here…I would never push ANYONE to have this test unless they really need it!

The recovery from the tilt table test was brutal (as you can read in the previous posts here, here, and here…).  The whole experience was traumatic, but I survived and after four and a half years, I finally had the correct diagnosis: Postural Orthostatic Tachycardia Syndrome.  Having seen so many specialists over the past few years and looking at the timing of everything, it is pretty clear that my POTS was triggered by my appendectomy in college.  The trauma from the surgery, the allergic reactions, or the mono set off this dysfunction of my autonomic nervous system.

At the follow-up with my cardiologist he put me on a beta blocker twice a day.  Since that appointment, I have only been getting better.  I still have bad episodes and bad days.  And right now I’m choosing not to work because the schools here are TERRIBLE.  But I am now able to work out three times a week at boot camp.  Sometimes I even manage to walk or run on the treadmill one other time a week.  And I can work part-time as an educational consultant and tutor for a couple families in the area.  Grant and I pretty much have no limitations because of my POTS, and we now know how to handle any of my episodes that might pop up.  We’ve even gotten pretty good about looking ahead at our schedule to figure out how to prevent potential POTS episodes.

The hardest part of this whole experience was getting the correct diagnosis.  Up until that point, it felt like my illness defined me.  It impacted nearly every aspect of my life and was a constant issue.  However, now that we know I have Postural Orthostatic Tachycardia Syndrome I can be defined by lots of other things.  With a correct diagnosis, I have been able to seek appropriate treatments that have made a positive impact on my life and make accommodations so that my illness does not take away from my quality of life.  The reality is that POTS is something I will have for the rest of my life.  And although there will be points my symptoms will get better and times when they will be worse; it is never going away.  But that’s ok.  Because now I know how to manage my illness and can live my life.

Disclaimer:  While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

1 comment:

  1. Oh my goodness girl. I just cannot imagine the frustration over not being able to figure out what was wrong. And to have so many doctors tell you it was one thing and have it be something else entirely. Good for you for advocating for yourself and pushing for more answers!


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