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Just doing my best over here to chronicle my chronic condition with alliteration, humor, and a whole lot of spoons!

The Three Medical Amigas

The Three Medical Amigas

Ok so-

I probably see my friends Erin, (left, my name twin/plant-lover/all-around-funny-lady, advocate & medical ally) sister to Lauren with the beautiful pixie cut on the right. I, also named Erin, am in the center rocking my loud graphic Rebel tee, obviously.

For nearly two years, I have a long running list of people I’d love to see, but can’t due to literally feeling so bad ALL the time—plans are just not my jam.

This picture was taken last week. I wish I was feeling better and could see them more often than every 4-6 weeks (hey! I’m a doctor! jkjkjk) BUT that’s where I’m at right now. 

(In order for this next section to be most effective, please read as Ron Swanson. It’s important.)

I’m worried you heard “I feel bad all the time.” I need you to understand “I feel bad every second of every day, sometimes on the low or high side, but all in all: bad. Now bring me all the bacon and eggs you have.” 

Funny but not really? Story of my life, ha.

I have been so bad lately that instead of seeing each other, Lauren and I communicated through text using gifs/emojis, and we talked on the phone while resting in the comfort of our beds/couches, wearing ice packs and/or heating pads depending on the weather (I see you Barometric pressure).

But these two. Hooboy. They are a sign that the universe ALWAYS has my back. 


Lauren and I

met through our mutual physical therapist (once we got through the HIPPA hoops that is) because she had “finished” her bone marrow transplant treatment and, as one can imagine, needed some help to relearn how to move her body and function as independently as possible after ALL the things (chemo/radiation/bmt,  she rocks so hard I can’t begin to say...).

Her story is incredible and maybe she’d like to do a tell-all someday, so I’ll keep it short and summerizy—

 

Exhibit A:

Since we met over a year ago, we found that even though our initial diagnoses were different, we face a helluva lot of the same challenges on. the. daily.

The sounding board of not only our friendship, but also that special relationship of our parents (they are caregivers in both of our situations, #LuckyToHaveEm) plus our siblings too! Everyone in our tiny family community “gets it” more than literally anyone else; and that’s just how it is.

So it’s even cooler, amazing really, to have those supports for ALL of us #CareGiversNeedSupportToo in the Schiller family: us “kids” hanging and chatting about millennial things, the “grownups” swapping stories and hugs. It’s really less Kum-ba-ya and more cathartic, I have to point out. We’ve even run in to each other at appointments at one of the largest clinics in MN so...it’s like the universe keeps forcing us into each other’s lives because she knows how gd hard we need it.

Exhibit B:

What you won’t see in the pic is how there is never judgement/questioning/alarm for:

  1. Needing to stay silent and stare at the table while the sisters and our mom’s talked. 
  2. For wearing Bluetooth headphones (blasting Lizzo) while we were conversing to drown out the loud surrounding noises of the park.
  3. For wanting to Kodak that seemingly inane moment. We all look so great (but also #WhatInvisibleIllnessLooksLike) and to me it was commemorative. Me: ARGH IM OUT OF THE HOUSE & hanging with my best peeps take our picture!! Etc. Etc. Etc....

I know these ladies, and their parents who aren’t pictured, have done so much for those in the AML/bone marrow/Leukemia patient community at the University of Minnesota. Lauren actually had this rare form of leukemia TWICE, went through BMT twice and, yay!, is cancer-free! 

But for anyone who knows, life after cancer is: a rollercoaster/a monster/you-are -susceptible-to-zillions of-other-things. For some, it’s smooth sailing and that’s so awesome! However many others still struggle. So be kind. Be KIND. BE KIND.

My advice

to anyone in a health crisis, or who has gone through something herculean and is straight-up struggling: seek out people like Lauren and Erin.

They’ll give you tiny cacti, love and support, and go back and forth with you telling hilarious medical stories that a very small percentage of the population will believe could be true.—I assure you we could write the wildest book.

So, if you’re here on the screen, thanks for sticking with me! I’m almost done...literally: I’m talking like Sloth from Goonies and my brain is turning to applesauce.

Somehow I feel like it’s important for me to say this too: I really really want to see my friends, their kids, and my old co-workers. But I need to see the Schiller girls first when I am up for it. Because—cacti.

For Bone Marrow (+ umbilical cord) donation Information visit Be The Match

XOXO

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Pps: Need support & upliftment from other fun invisible & chronic illness/disability peeps who get it? join our closed invisible/chronic illness FB group here 

Curious about Cerebral Cavernomas? We got you, boo.

Curious about Cerebral Cavernomas? We got you, boo.