January 1st, 2014

This day last year, I said 2012 was the worst year of my life. I also stated emphatically that 2013 would look very different. And it did. But not in a good way. In 2012, I was still working for 5 months of the year. I got to eat bread and eggs and ice cream in 2012. I got to spend 11 days with my soul sister, E., when she visited from Dublin. I was able to run errands, go to the dog park, talk on the phone, and see friends for 9 months of 2012. Unfortunately, that all went away. Now, I can safely say 2013 was the worst year of my life.

The details are too difficult and depressing to describe or dwell on, but neither will I paint a silver lining around this dark life. It has been unspeakably difficult, what didn’t kill me did not make me stronger, and I’m not grateful for the lessons I have learned since being sick. I am a sadder, scared-er, weaker, lonelier person and I’d give anything to go back to the ignorance and energy of healthier days.

However, I am much more aware of things I used to take for granted and I am more thankful than I’ve ever been: For every bird, tree, and arc of sunshine. For every single dollar that I saved before the abrupt halt of income. For every snort of laughter, every day that my legs hold me, and every book, film, song that distracts me. For every time someone asks my opinion or feels they can use my muscle-wasted shoulder to cry on. For every time someone braves the thin ice of chronic illness to ask what it’s like or see how I am or offer to help, knowing full well they risk breaking through to the deep despair beneath.

Most of all, I am thankful for my family. My father, mother, brothers, sister, in-laws, friends, husband and dogs. (Oh, husband and dogs! I am alive today because of you! And I fight for tomorrow because of you!) Each day that they are healthy brings me solace and I experience stark, unfettered joy at every holiday photo, restaurant dinner, yoga class, and optimistic Facebook post. So, keep singing, fishing, working, running, and traveling, everyone! Just promise me that you do it with an eyes-wide-open acknowledgement of how short and fragile our journey is on this earth.

Here is my 2013 wrap up:

January: Was sorely disappointed at the Chronic Fatigue Clinic; saw first private doctor, tried cranio-sacral therapy.
February: Not much except stool and saliva tests.
March: Was sorely disappointed at second rheumatologist visit; saw second sleep doctor; had the 4 best days between September, 2012 and now; Zyrtec trial.
April: Got teeth cleaned; started seeing wonderful physical therapist; started the awful process of getting an oral appliance for sleep apnea which still hasn’t happened, almost 9 months later; Seriphos trial; started Chinese herbs.
May: New nephew R. was born; saw dermatologist; phophatidylserine trial; Nasonex trial; tried Tizanidine; turned 40; dear friend E.S. died far too young.
June: My mother and D. visited; saw cardiologist; tried valarian; started Unisom; Gabapentin trial; added rice back to my diet.
July: My father visited; stopped weekly therapy; stopped phone calls for the most part; stopped Chinese herbs.
August: Stopped eating soy, citrus; added lentils, garbanzo beans; tried Trazodone; stopped all vitamins and supplements; J. and Z. gave me a scooter: my ticket to some freedom.
September: My mother and brother, T. visited; abdominal pain started; husband’s family visited; celebrated 15th anniversary.
October: Brother A. visited; saw ENT doctor; saw “environmental” doctor; saw neurologist; had bad reaction to Unisom; tried Xanax; Zetonna trial; had hellish 2-week repercussions to autonomic testing.
November: Tried low-histamine diet for 5 weeks; methylation pathway, mycotoxin and adrenal tests; started vitamins again and Metagenics shakes; tried iv fluids and caused anaphylactoid reaction; another zyrtec trial; saw allergist; steps per day decreased below 700 and haven’t come back up.
December: New nephew G. was born; Christmas with sister; saw ophthalmologist; started juicing; tried Ativan.

Like last year, there were births, deaths, doctors, drugs, symptoms, setbacks and disappointments. And, like last year, what I see when I look at this is how lucky I am to have family that would travel across the city, country or ocean to visit me in my home and offer love and support, without judgement.

Happy new year to you all. 2014, please look different than 2013 ~ only in a good way.

Hubby sweeping in the new year, a family tradition. :)

Hubby sweeping in the new year, a family tradition. 🙂

Remember the little moments,

like this,

that were good.

Cheers.

~James Gandolfini in The Sopranos R.I.P.

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21 thoughts on “January 1st, 2014

  1. I’m loving the sweeping in of the New Year tradition, as for your 2013 synopsis, it is harrowing but it is living. As I once heard “as long as you can breathe, you can live.” I will be thinking of you, especially when I watch my birds feed at the bottom of the garden. xx

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    • E. Milo says:

      My Mum always did this- swept the old year out the back door and the new year in the front door at midnight. I used to literally go into every room and gather the air with the broom to get it out the back door. This was the first year my husband did it for me (I didn’t make him go into every room) and we didn’t get around to it until the night of the 1st… but I really hope 2013 is out of the house!!

      John Kabat-Zinn said, “as long as you are breathing, there’s more right with you than wrong with you.” I always liked that. 🙂

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  2. I love the sweeping in of the New Year, that’s such a great symbol. I really really hope that the cliche ‘things can only get better’ will come true for you. 2013 is done and over and I really really hope 2014 is an improvement for you. 2014 will also hopefully be the year we meet in person, still planning route (and hitting down the voices in my head that keep saying ‘ you can’t do this’ do you really think you’re well enough to do this…’) but probs be in Seattle area from 28th April til 4th May 2014! I hope you’re well enough for a (very understanding happy to make own tea) visitor by then 😉 Happy happy new year Elizabeth, sending you love, hugs and lots of support xx

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    • E. Milo says:

      Thank you so much, Jess! I will keep praying that my health improves enough to see you! How exciting that would be. I would love to persuade you to visit this part of the country June/July through September- it is such an incredible city with perfect summer warmth. I know you’re traveling for your birthday, though, so I will pray that those dates are sunnier and drier than usual. So excited for you! X

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  3. Jackie says:

    ” For every time someone asks my opinion or feels they can use my muscle-wasted shoulder to cry on.”
    Ditto!

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    • E. Milo says:

      I know you’re like that, too! I spent my life loving being someone who could give advice and never be shocked by or judge what someone might tell me. In my job, I was the one mentoring, teaching, directing, listening… I miss it so much!! It’s so important to feel useful. X

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  4. Maureen says:

    I send you all the love and light I can to you. You are in my thoughts daily. Reading your post takes me to a dark place of anger and frustration that I will not allow knowing you are heroically living and dealing with this reality every second of your life. You amaze me with your ability to analyze and look your worsening health in the eye and all the paths you have tried to take for relief. I remember the young lady who was so full of spirit and energy and laughter and I hate what this disease has done to you. I love you. Maureen

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  5. Stina says:

    Brilliant post! I can relate in so many ways. Here’s to a wonderful new year filled with adventures hopefully beautiful ones with better possibilities than the last. You amaze me, thank you for sharing!

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    • E. Milo says:

      Thank you so much for this comment! I worry sometimes that my posts are too real- that maybe I should bring out the happy a bit more… I’m not unhappy, it just hasn’t been fun and I want to be honest. Thanks for the encouragement. 🙂

      Like

  6. Trisha says:

    May 2014 be a much better year, full of pleasant surprises and improvements! Seriously, I hope it is for you.

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  7. mom says:

    Thank you for the photo. Feliz Navidad – and new year!

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  8. Claire says:

    Thank you for sharing – you had the year that no-one else wanted. I hope things start looking up for you!.
    I love your highlights though – even as chronically ill people, we are still here, and we are still ourselves. Whenever anyone has come to me with their problems I feel so blessed to be useful, if only for my ears! Just because I have problems does not mean I can’t listen to the problems of others and be sympathetic.
    All the best for 2014
    xx

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    • E. Milo says:

      Exactly! I feel like people have tried to leave me alone, which I DO need because I can’t handle much activity, but it still feels wonderful if someone says, “I’m having a really tough time and you’re the only one I want to talk to.” Even if I can only listen, it makes me feel human again.
      Thank you for the well wishes! Right back at you.

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  9. The breathing quote is spot on, we can so easily get bogged down by all that sucks and all that hurts but there is still always goodness and happiness too. Just sometimes, maybe, we need stronger glasses! Stay strong. 🙂

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  10. hayley-eszti says:

    2014 HAS to be kinder to you, I really hope it will be. All the best to you and I look forward to another year of reading your blog. Take care.
    Hayley-Eszti
    hayleyeszti.blogspot.com

    Like

    • E. Milo says:

      Thanks, H-E! I’m determined to start writing more again, it’s just been a rough few months. It’s so good to feel encouraged. Hope 2014 is treating you well so far. X

      Like

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