She’s ALIIIIIIVE!

Not only that, but i’m writing from beautiful Franconia, NH, where I am staying with my family at the vacation house.  My grandparents had the house built 30 years ago in Mittersill, a village that is meant to mimic EXACTLY its Swiss counterpart.  Back in the day, glamorous movie stars and the wealthy would come to stay, hobnob and ski.  It’s pretty amazing.  All of the houses are Swiss chalets.  Here’s where I am writing from right now:

And when I turned around after taking this picture, here’s what I saw:

But let’s shelve that for a bit.

First of all, allow me apologize for the ridiculously long hiatus since I last actually posted a blog entry.  It’s been a really busy couple of weeks, but I promise I have a good excuse and very  exciting news.  After a year and a half illness that left doctors stumped and me completely disillusioned…just as I started to lose hope, I FINALLY got a diagnosis.  I know that I have briefly alluded to this in the past, but now that I know what exactly it is (and I have confirmation that I am anything but crazy) I can share more.

So, what exactly has been going on?   When I stand for long periods of time, switch positions suddenly (sitting or kneeling to standing), or exert myself I have to be really careful because my body often does not respond appropriately- often times I will start to black out or else my heart will pound so quickly that it feels like a single continuous beat, rather than individual beats.  What this has meant is that not only do I have to be cautious when doing simple things, but the worst part is that I have experienced serious exercise intolerance for a while now, and had to give up running as I faint if I run for more than four minutes or so (on a good day).  It has been very difficult for me, as a former runner and athlete (dancing, figure skating, track and field, cross country, skiing, softball, volleyball and crew in college,  and running) for most of my 25 years, to deal with what has felt like a rebellion or failure of my body.  I have always pushed my body to its limits- whether it was running suicides in volleyball until I nearly threw up, or ice skating with a hurt back or rowing with a shoulder with tendonitis.  What my mind has commanded, my body has done.  Sometimes I feel like I am trapped in a body that has turned on me.

Another disturbing symptom?  My fight or flight reaction is on a hair trigger.  It can be triggered by ABSOLUTELY ANYTHING and what that translates to is the panicky feeling your body initiates when you are frightened, but without the mental fear.  It’s an extremely disconcerting thing.  It means that when I am stressed or emotional, my body gives me away because I start to breathe very quickly and my heart pounds and  there are even times when I start to tremble.

So…what the heck is it, you ask?  After 9 doctors, 7 of which told me I was crazy and just having anxiety attacks (when the only anxiety I felt was related to the fact that no one would believe me and no one could help me!) I  FINALLY saw the right doctor- a specialist that I got in to see after 6 months and he figured out that I have what is called Postural Orthostatic Tachycardia Syndrome (POTS for short- appropriate for a food blogger, yes?).    Basically my autonomic nervous system does not regulate my body properly- my blood pressure drops inappropriately and often, my heart will speed up to try to compensate for it.  What’s so difficult is that some days I am completely fine (although vigorous physical activity will almost ALWAYS bring some symptoms- especially running.  I absolutely cannot run).   The specialist is amazing.  It turns out that POTS is very difficult to diagnose and many doctors know very little about it.  When I first saw him, I told him flat out that I was afraid he’d think I was crazy, too.  He was my last hope.  You know what he said? “I promise you’re not crazy.  Almost every patient I have has a story almost identical to yours.  When doctors don’t know what is afflicting the patient, rather than admit that they don’t know what’s wrong, a lot of time they’ll dismiss it as a mental issue to avoid having to admit their own failure.  You’re in the right place- it just took you a while to get here.”  And there you have it.

The one thing I want people to take away from all of this?  YOU ARE YOUR OWN BEST ADVOCATE.  Just ask Chanelle (who is amazing, btw.  Read her blog if you haven’t already!).  It is YOU that lives in and with your own body.  YOU who knows it best.  I saw some of the most well- respected doctors in the country- my aunt is a doctor and got me the cream of the crop- and even they didn’t know.  Do not give up.  Educate yourself.  Keep meticulous records of your symptoms.  Do whatever it takes.  Keep your hope alive.

When I first got sick I started to do research- TONS of research, and POTS was one of the first things that I thought it could be.  I mentioned it to the very first doctor I saw.  She immediately and adamantly dismissed the idea and proceeded to put me on very serious medication that made me so sick I ended up in the  hospital.  I’m sure she thought that I was telling her how to do her job when I suggested that I seemed to have an alarming number of the symptoms.  But as it turns out- I was right.  Always trust your instincts (I’m afraid I’ll have to ignore the instinct to smack her upside the head- although I may write her a letter).

I cannot tell you how liberating and wonderful it has been to finally get some sort of validation and of course, to know what exactly is happening in my body.  Not only that, but I have a treatment plan that will be adjusted as we go along and the specialist is very respectful of my wish to avoid medication.  While I was waiting for the appointment with him, I was put on powerful steroids that caused weight gain to try to stabilize my symptoms- it worked, but at a cost.  For the past couple of weeks I have been working on a plan to get my health back, return to my healthy lifestyle and started exercising again so that I can return to my happy weight.  It will take a really long time to get back to where I was- it’ll take patience and diligence.  But I WILL get back there.  I WILL run again.  I WILL regain some semblance of control over my body.

I’ll go into more detail as I post throughout the week, but some of the major decisions I have made as of late that I’d like to share:

  • I will be going vegetarian.  I will be easing into this as a pescatarian, then transitioning to a full vegetarian.
  • I have devoted myself to a yoga practice that is slowly helping me reconnect with my body and find a confidence I had forgotten I ever had.  I’ll be doing a year-long challenge with my wonderful friend, the lovely Christie.  I am so excited for this and will be posting more details soon!
  • I am also exploring a number of other exercise programs that I can do on my own, at my own pace so that I can relearn the cues my body sends me and hopefully, as I get better, rewire them.

I am so confident that this will all help me very much in my struggle with body image, as well.  Lately, I have felt as though my life is coming together in a way that it hasn’t in a very long time- I have found new understanding of the breakup of my relationship that has led to some measure of peace, I have stood up for myself  in a very difficult situation involving the death of my father and distribution of his estate, and I have begun to find my voice.  With each difficult hurdle I jump, I get a little more dtermined.  A little stronger.  A little more unapologetically me.  I’ve always pretty much known who I am, but now it feels like i’m finally figuring out what I want and that it’s ok to go for it.  And THAT is an amazing feeling.

Today has been a busy day.  I was skiing these:

Ok, wait.  I lied.  Not THESE exact mountains.  Cannon Mountain, to be exact.  The one that this photo was taken from.  But I imagine if I took a photo from the peaks in this picture it’d look pretty similar- you know, aside from the chairlifts and tiny ant people.  It’s WONDERFUL to ski again.  Today went really well- the conditions were AMAZING, there wasn’t a cloud in the sky and I only had to stop and rest for a short while when I started to feel a little bit lightheaded.  That, for me, is a HUGE victory.  I had some great eats for lunch:

Whole wheat wrap with hummus, muenster cheese and veggies from a stew made by Colorhungry mama

Veggies that got a nice bath in some hummus before I practically inhaled them- actually, I'd already scarfed down a good number of them- hence the lone carrot.

Pretzel flats (gotta love Trader Joe's!) also getting the hummus treatment...

Somehow, the half an apple, handful of nuts and dried fruit and 2 oatmeal butterscotch cookies somehow escaped into my mouth (or failed to escape from my mouth, rather)and didn’t get photos.  It all had great staying power and I was full until dinner!

Of course, before dinner, we went straight into the hot tub.  I have to say that it’s a little disconcerting to be putting on your bathing suit when it’s 17 degrees out and running outside to jump in wearing NOTHING but your suit!  It was absolutely incredible- I could feel my muscles relax, all the knots slowly melt away, and let me just say…there was a very interesting conversation about dream houses with my cousins.  My 8-year old cousin is determined to have a house with a ballroom.  And a bathroom that has “FIVE DIFFERENT SOAP DISPENSERS!”  The view was beautiful, steam was rising out of the water and while my hair kept freezing, my body was in heaven.  It was a wonderful way to relax.

Dinner was simple and delicious.  We had swordfish, tuna, sweet potatoes, spinach and mushrooms in a little red wine, salad…and blueberry cobbler for dessert!  Again, the cobbler somehow escaped a picture!  But here’s  my plate- and please pardon the flash.  Apparently, Swiss chalets have crappy lighting.

And after dinner, the kids informed us that it was family game night and we could choose between Clue and Whosit? Never heard of Whosit?  Well, remember how I said that my grandparents built this house about 30 years ago.  Actually, it was more like 40 and Whosit? is a game from the 70’s, a relic, if you will, of the last generation to use this place.  So, other than the fact that the characters look like the Village people, how can you tell this game is circa 1970ish?  First of all, the game is easy.  You pick a card with your character on it and then people take turns picking cards that ask you yes or no questions about your character.  The game is five and up.  Here are some sample questions:

*Do you smoke?

*Are you white?

*Are you black?

*Are you ORIENTAL?

Oy. I really hope no one is offended by that.  I voted for Clue.  It was excruciating.  I’m exhausted.  Tomorrow’s another day of skiing and I can’t wait!  Today I took it easy- mostly just blue trails (intermediate-ish).  Tomorrow I tackle black diamonds.  🙂

Good night!

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About annenglish

I often think my the right side of my brain dominates- I live to create things. Color is one of the things that brings me great joy and in everything that I do, it is a theme that takes on great aesthetic importance. I am a jewelry designer, metal artist and writer (wanna-be.) During the day I work in an office, and while I like it, I spend my days dreaming about the next thing I want to make. As a result, I am the post-it queen- design ideas are always strewn about my desk, waiting for me to gather them up and take them home at the end of the day. Oh, yeah. I'm also a tremendous slob, which is unfortunate because I love to cook and washing dirty dishes is my least favorite chore to tackle. I'm a healthy food enthusiast and amateur chef. Cooking is a tremendous creative outlet for me- experimentation is my hallmark...whether it's surprising color combinations or flavor combinations.
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10 Responses to She’s ALIIIIIIVE!

  1. Great post, Jenny! I am so proud of you and just know that you are on your way to the happiest times of your life. I am very excited to the the “un-stuck” challenge with you and can’t wait to see how it plays out.

    Enjoy the rest of your skiing adventure!

  2. I am so glad you finally have some answers! I am sure you feel absolutely relieved! The place you are staying is absolutely gorgeous. Enjoy your time there. 🙂

  3. I’m so happy that you finally know what is going on with you, AND you know you aren’t crazy!! Enjoy your R and R!

  4. beautifuldancer says:

    AMAZING AMAZING AMAZING! could not have said it better myself! Fight for your health and stay strong and know that you are so blessed to come out of the other side of this an EVEN MORE beautiful and amazing woman.
    God gives STRONG women these trials for a reason and you are living it!

    I’m so lucky to have met you through the blogosphere because although I may inspire YOU, you truly do the same for ME!

    xoxo
    Chanelle

  5. abbynormally says:

    So glad you got some answers!!!! Have fun skiing, too! 🙂

  6. debby says:

    So good to hear from you! And that is an amazing story about your diagnosis and doctors. I really have a love/hate relationship with doctors. A little heavy on the hate, I am afraid.

    I am jealous that you are out there skiing. Maybe I will try it this year!

  7. Stephanie says:

    It must be a relief to finally know what’s going on. I wish you all the best on your journey back to health.
    BODA weight loss

  8. Pingback: The Yogi Within and Colorhungry Cinema « Color Hungry

  9. I joke around with my huz all the time and sometimes bust out the, “but you’re my oriental lovah!”. Ha!

    This was a pretty powerful post girl. I’m glad that you finally got the answers you needed and deserved. I really hate that about the medical profession, when doctors don’t listen to what you are trying to tell them. It can be really frustrating and a little soul draining.

  10. Pingback: The Rise and Fall of a Runner. « Color Hungry

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