chronic illness · chronic pain · crps · family · friends · ivig · lyme

the year i broke open (32)

Close to midnight tonight I will turn 33.

Its kind of crazy to think another year of my life has passed. Like New Years, I think a lot of us sit down and think about the past 365 days. The trials and the triumphs, stuff we wish had been better, and stuff we are grateful wasn’t worse.

Every year since 2012 I have hoped that the next year will be the year I get better and feel better and begin living a fuller life.

4 years later I got half of my wish in finding out that my Lyme Disease is truly in remission.

I always pictured it being this momentous moment, crying and hugging my dr and then going out for a walk or a run to celebrate. I never imagined when I got that news that I would be in a wheelchair and still REALLY not feeling well. I had never considered that the Lyme would leave several places in my body damaged nor was I completely prepared for my CRPS to drastically worsen and spread and spread and spread. It was almost bittersweet when I learned that the Lyme was in remission but I was nowhere close to taking that celebratory run OR walk.

When things are rough pain-wise as they are often are, I do try to remind myself that at least the Lyme is gone. It caused me so much pain, suffering, and more bizarre symptoms than I ever imaged possible. So often I was terrified that I would ALWAYS be sick with Lyme and that is something I can put to rest.

So much happened this year.

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3 weeks after my 32nd birthday we moved back to my hometown of Charlottesville which has been wonderful for both Sean and I.

He loves living in Charlottesville which makes me abundantly happy. I am excited to feel better and explore this city more with my husband. Some days it’s still very surreal to be HERE where I grew up after living away for over a decade. It’s also been great for me medically as the hospital where I do my ketamine infusions is maybe 8 minutes from our house. After doing so many grueling trips to NYC most of 2015, its great for my family members and friends to be able to come see me at the hospital without any traveling nonsense.

I can definitely say tried a lot of things at age 32 to feel better.

Many trips to NYC to ascertain how much damage the Lyme did and trying to figure out a treatment plan to treat the damage and get my CRPS under control.

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8 grueling months of IVIG which were incredibly unpleasant due to crappy side effects and super $$$.

ivig for crps and small fiber neuropathy

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photos by jewel peach photography

2 weeks of free Calmare that sadly did nothing but flare me up more.

And then… the ketamine infusions that have given me some hope back even if my pain is still a beast.

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Beautiful things happened this year.

Crying so many happy tears while watching my brother marry the love of his life and gaining a spectacular sister in law who appreciates the importance of memes and Modcloth. Our family of 4 is now a family of 6 and it feels complete now that Laura is with us.

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photos by Doug Stanford Moving and Still Images

Sleepovers at my mama’s who now lives only 15 minutes away.

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Spending SO much more time with my BFF who now lives 8 minutes away after only seeing each other a few times a year due to living far away from each other for 11 years.

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Seeing Amber almost every week makes my life fuller than I could possibly ever explain. Everyone needs a friend who lays in bed with them, pushes them up and down hills in their wheelchair, and spends hours with them in the hospital.

Being 5 hours closer to my other BFF Katie and getting to see her more than I have in years.

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A few more weeks and she will be back here for movie nights, sitting outside for hours talking, and pool days at Moms.

Getting to have my Dad come spend at least 3-4 days with us each month.

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Celebrating 4 years of marriage with this guy who is forever my rock.

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Having several beautiful wonderful friends make time to be with me even though I live far away

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I had lots of fun hair colors and definitely rocked some fun makeup as well, even if I was the only person who saw it in person 🙂

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The pain and nausea has made me seriously isolated sometimes for weeks at a time but my life at 32 has still been rich and wonderful.

This year has had both yin and yang, light and dark. I have been in tremendous pain, unable to eat all day, and/or vomiting. I have also had sweet moments of relief and been able to do normal things like shaving my leg or going out to a movie.

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I found this poem awhile ago and it spoke to me in so many ways.

“the year of letting go, of understanding loss. grace. of the word ‘no’ and also being able to say ‘you are not kind’. the year of humanity/humility. when the whole world couldn’t get out of bed. everyone i’ve met this year, says the same thing ‘you are so easy to be around, how do you do that?’. the year i broke open and dug out all the rot with own hands. the year i learnt small talk. and how to smile at strangers. the year i understood that i am my best when i reach out and ask ‘do you want to be my friend?’. the year of sugar, everywhere. softness. sweetness. honey honey. the year of being alone, and learning how much i like it. the year of hugging people i don’t know, because i want to know them. the year i made peace and love, right here.” (warsan shire)

I am setting intentions for 33. I may share them in a separate post soon. I am heading into this next year of my life with hope, realistic expectations, and the knowledge that I will be ok no matter what happens. I have conquered years that were unimaginably hard and I am still in tact and breathing.

Its been real 32. Thanks for everything.

xogen

5 thoughts on “the year i broke open (32)

  1. You are such an incredible writer! You are so real, yet eloquent!I love reading your blog! I am hoping and praying for a great year for you! Happy Birthday!

    1. Thank you SO much Cindy. I appreciate you reading this blog so much. I hope you guys are all having a marvelous summer. I LOVE your new hair <3

  2. Your photography is as stunning as your perspective. You have the beauty and wisdom of an old soul. I’m so thankful you’ve chosen to share your journey.

    1. Wow. Thank you!!! This blog has definitely helped me reconnect with my photography roots, I was never without my camera in high school. Thank you SO very much for your kind comment and for reading. Im really enjoying your blog as well. Hope today finds you well new friend.

  3. Genevieve, thank you so much for this post! Life does things in mysterious ways, and today it brought me to your blog via Instagram. As I’m going through some growing pains of embracing the fact that not everything in life is going to pan out the way I thought it would, your blog really helped me see everything in perspective. I truly hope your CRPS eases its grip, but no matter what happens, thank you for being strong and showing your strength to us.

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